ࡱ> &      !5@ Gdbjbj22 `rXX $"4B.B.B.h.$.A// 0 0"011 1*A,A,A,A,A,A,A$yCREPA911"111PA 0"0eA4441$ 0"0^>41*A44#59J:"0/ n )B.2|Z::tA0An:8Fw3F(:F:D11411111PAPA$"d e4"Manuscript Number MS#200202724 SUPPLEMENTARY DATA for WEB Parry-Romberg Syndrome: a global survey of 205 patients using the Internet. Jon Stone MB ChB MRCP Email - Jon.Stone@ed.ac.uk (E) - Figure 1. Geographical Distribution of respondents   (E) - Figure 2. Age of Onset Table 1: Parry-Romberg Syndrome Clinical Characteristics of 205 respondents extended data DemographicsSex165 Female: 40 MaleAge (median, range)32 Years (range 4-64)Country of OriginUSA (132), Australia (19), UK (13) Canada (12), New Zealand (5), South Africa (4),France (2), Ireland (2), Sweden (2), Argentina, Finland, Germany, Guatemala, Holland, India, Iran, Italy, Japan, Korea, Singapore, Tunisia, Turkey, Venezuela (1 each).Handedness 90% right handed.DiagnosisAge of onset (median, range) 10 years (1-50). (Delay to Diagnosis - 4 years (0-41))Diagnostic label*45% Parry-Romberg disease/syndrome; 40% Romberg syndrome; 16% (Progressive) Facial Hemiatrophy; 16% Scleroderma en coup de sabre (5% isolated); 6% Linear Scleroderma (1% isolated).Self rated severityVery Severe (7%), Severe (24%), Moderate (36%), Mild (23%), Very Mild (8%)Location AffectedFace100% ( 46% left, 52% right, 2% bilateral)Forehead - involvement 63% with a line51% (10% in the corner of the eye, 20% in the middle of the eyebrow, 19% within one centimetre of the middle, 1% unspecified).Lower Face75% Cheek, 43% Chin, 55% lips, 50% teeth/gums , 25% tongue Arm, Trunk or Leg9% Arm( 74% ipsilateral), 14% Trunk ( 81% ipsilateral), 10% Leg ( 75% ipsilateral). 19% any involvement of arm, trunk or leg.Other SymptomsEpilepsy11% (23 patients, nine described partial seizures - 5 left side of body, 4 right)- no correlation with severity, Scleroderma en coup de sabre or distribution of hemiatrophy.Migraine / Facial Pain52% Migraine (lateralised in 55% - 90% of these pain ipsilateral to hemiatrophy) Facial Pain46% Facial pain (always ipsilateral to hemiatrophy) - ranging from 'dull ache' to electric shock type pain. Occurring equally in left and right hemiatrophyEye / Vision problems46% (e.g globe retraction, abrasions, uveitis). 17% history of uveitis.'Unusually Cold Hands"31%. Six patients had a diagnosis of Raynaud's phenomenon.30% had Scleroderma en coup de sabreJaw problems35% jaw pain or difficulty opening or closing jaw.Depression and Anxiety46% anxious, 10% depressed (HAD scoree"8).Possible Aetiological FactorsGeneticSix (3%) patients had a relative with facial asymmetry. None formally diagnosed (orbital asymmetry had been confirmed medically in one).Autoimmune DisordersVitiligo (17%), Thyroid problems (10%), Systemic sclerosis (5%), Inflammatory Bowel Disease (5%), Rheumatoid Arthritis (4%), Ankylosing Spondylitis (2%), Lupus (SLE) (2%), and MS (0%).Factors at onset12% reported an injury they felt was relevant to their condition.Pregnancy / Childbirth26% of patients reported acceleration of symptoms (68% of these were women during pregnancy or childbirth).Lyme Disease3 patients tested positive for Lyme. None had clinical disease.*More than one diagnostic label allowed 9:;=?jm r`UKC;C;h2OJQJheOJQJh2CJOJQJh2CJH*OJQJ#heh2CJH*OJQJmH sH $heheCJOJQJaJmH sH heCJH*OJQJh2CJH*OJQJh20JCJOJQJh2CJOJQJh25B*CJOJQJphh25CJOJQJh25OJQJh2CJ$OJQJh2OJQJhe0J6CJ OJQJh25CJOJQJ:;<=>?uusssss 0d*$d*$ 0d*$`0*$Ykd$$Ifl9!!04 la xx$If $d@&a$ $dFd    . $$Ifa$gd2 u$_7gd1gde$a$     * - .      q r < =   ھ~~ssh15CJOJQJh16CJOJQJh1CJOJQJh1OJQJh15OJQJh15CJOJQJheheOJQJhUshe.jheCJOJQJUmHnHsH tHuheCJOJQJj|h2CJOJQJUh2CJOJQJh2- okd_$$Ifl   0j ~$      t0  4 la $$Ifa$gd2 $$Ifa$gd2okd`$$Ifl   0j ~$    t0  4 la $$Ifa$gd2okd[a$$Ifl   0j ~$    t0  4 la  $$Ifa$gd2okd+b$$Ifl   0j ~$    t0  4 la    z $$Ifa$gd2 $Ifgd2okdb$$Ifl   0j ~$    t0  4 la  9 q $$Ifa$gd2okdc$$Ifl   0j ~$    t0  4 laq r < $$Ifa$gd2okdqd$$Ifl   0j ~$    t0  4 la< = Q $$Ifa$gd2okd3e$$Ifl   0j ~$    t0  4 la $$Ifa$gd2okde$$Ifl   0j ~$    t0  4 la z $$Ifa$gd2 $Ifgd2okdf$$Ifl   0j ~$    t0  4 la $$Ifa$gd2okdyg$$Ifl   0j ~$    t0  4 la  z $$Ifa$gd2 $Ifgd2okd;h$$Ifl   0j ~$    t0  4 la  z $$Ifa$gd2 $Ifgd2okdh$$Ifl   0j ~$    t0  4 la s $$Ifa$gd2$ @$Ifa$gd2okdi$$Ifl   0j ~$    t0  4 la 4z $$Ifa$gd2okdj$$Ifl   0j ~$    t0  4 la Pz{}~HI[\r34AtuTVXZ\dddd˼h20JOJQJjh20JOJQJUUh2CJOJQJh1OJQJh1h1OJQJmH sH h15CJOJQJh15OJQJh1h1OJQJmHsHh1OJQJh1CJOJQJ5z{|} $$Ifa$gd2okdCk$$Ifl   0j ~$    t0  4 la}~ $$Ifa$gd2okdl$$Ifl   0j ~$    t0  4 laH $$Ifa$gd2okdl$$Ifl   0j ~$    t0  4 laHI` $$Ifa$gd2okdm$$Ifl   0j ~$    t0  4 la[ $$Ifa$gd2okdKn$$Ifl   0j ~$    t0  4 la[\rz $$Ifa$gd2 $Ifgd2okd o$$Ifl   0j ~$    t0  4 la3z $$Ifa$gd2 $Ifgd2okdo$$Ifl   0j ~$    t0  4 la34Atz $$Ifa$gd2 $Ifgd2okdp$$Ifl   0j ~$    t0  4 latuTz $$Ifa$gd2 $Ifgd2okdSq$$Ifl   0j ~$    t0  4 laTVXZz $$Ifa$gd2 $Ifgd2okdr$$Ifl   0j ~$    t0  4 laZ\#_kds$$Ifl4   ~$$   t0  4 laf4 $$Ifa$gd2okdr$$Ifl   0j ~$    t0  4 laokd/t$$Ifl   0j ~$    t0  4 la $$Ifa$gd2 $$Ifa$gd2okdt$$Ifl   0j ~$    t0  4 la $$Ifa$gd2okdu$$Ifl   0j ~$    t0  4 la $$Ifa$gd2okduv$$Ifl   0j ~$    t0  4 la $$Ifa$gd2okd7w$$Ifl   0j ~$    t0  4 la d d"d#d$d%d&dte\ZZZZ$h]ha$hQ='&#$]h $Q='&#$a$$a$$a$gd1okdw$$Ifl   0j ~$      t0  4 la PAGE 2 Stone et al  EMBED Excel.Sheet.8  d d d d"d#d$d'd(d>d?d@dAdBdFdGd̟h2CJOJQJjxheUjK{A heUVhejheUhUsh2h2OJQJh20JOJQJjh20JOJQJUhUs0JOJQJmHnHu&d'dBdCdDdEdFdGd$a$gde( 00:p1. A!"n#$%#&P 0A .!"6#$% 0. A!"#$%`!>^X: ` _5xlEgvwr7m=Mw#ECkH%('v )i"41 ((@)؆`CئA7ow^R[/۷ߙ{o~g2g >yPYŭt:V绚-ג!>Gd!.tL7Gq Fi3iqZ\=ioog!N V+iDESTAx:'8g8޴T+GkmgϛK7u?Oy7\ӊ*6a_%/ox 2gmɋF|81/N({%op Ԋ }#DwMA_ 2m\ptNA_, Gc夭M'Rܲؼ=ueUwt0یaۍ(cc𾣿&>fwˑ耞N~4W??7ܸ7͟RhxLnz'i9"D)`$'Oy̛< 3ṬB+!8zrR,{O_^D:::|99ފ}"$X b5)ݻטR$Xr:;;9,GB` j߾}X+b kڿ1$Xz8` )6cmBBV[6jEB`o&Xb [1ڂ[JToo1V$h#Gc!!6uQcmHHDcmGB` رcX;b';:~1N$ nv#!ED:{1VRQΝ3:>Mԅ N#!yuEcHH1 QXHHq+D c]AB)RHHyqQ.]2\RDuecRU@1VRāuUc8Rj&Q###X3b6Pv1l$(ׯc !EQ7n0J !E%PDR)cJ$n޼i5 )5gyI֭[ !EPu>ouIQz=y5VKZ5)̧/CM twE}l]Xp<ߎ=/^WQj(q~R~+I-?eN^b*y1g譯 o}q׫ٽ9_^c`:,QϬKg,T7>c3*6e|FuR,6oT!/۰C,ܫ;ğb!,P]UbB,uTWo%j,6ǒ/7OXl7ڍ`y?$ȜdϩfYu ;WMwuViUq8izFJVVKZ-i{w_[|noIH{{c)&vi)Ҟ<ͱJZ+i]ugZVƾVڿg;zV}27jR4SPyY*|ZUO]ʧj> WAmrAw*yJ&ec@XkjcneR^(F=X[&QQ}k+:ݩIT^JS[ұcmUyJqjk~\o+7|qw缞V#8_Wgwf5ڳW77ƆdSsi> %xS;Z1xhO5uOgSM6C{-e@| Ӄ? Gп.fE8O=`454i\Ń=Tw":[oo|Ysn}4:v>srd_ܒz$$If!vh5!#v!:V l05!41_Dd<-_r  c NA*205Romberg World MapRk^:#s~Y$ 6G^ F?^:#s~Y$ 6JFIF``HPhotoshop 3.08BIM``8BIM8BIM 8BIM' 8BIMH/fflff/ff2Z5-8BIM8BIM _`CJFIFHH'File written by Adobe Photoshop 4.0Adobed            `"?   3!1AQa"q2B#$Rb34rC%Scs5&DTdE£t6UeuF'Vfv7GWgw5!1AQaq"2B#R3$brCScs4%&5DTdEU6teuFVfv'7GWgw ?꾪}Zg_I¶1)u?9,ns46>O*?VJr_Zg}U\j@jv{RKwyٷEC뛱{`F?H5:ZeV/f17& cuVot}/Ƙԓ?֫br(741UpЅL 9uoHqm]+pĩjkiUlIl*vudS2r2\W)?&T =-OVqrْ.`$1cis~(Kh&.vsK:.?OS`-?M/W)?&k~* 'oΫIc6Wtn˥Ԩ ?M4_ZԨʬNLgǬ=ST<8? o OY\>}\/XT^-c59m{֬?RR%WFJ0ci?y!-0}tnj?zGޑQpx~z&#i նN*9D5D`ӏfE׽NӴjKc]Zf浌h NִH3-MkC'hgo<|;F48C\@|2k_⣩>=Q~`+C(NWcMPw7'󿐋f=@ϵmm\KvB9UI4ã1[ϧ?590\Qj^O5w{mp.cc4I'R\۲:zfcjxCZngߐ~oD(d1 {qR'1MX'1Ǹ0E]ߜ[r/X:cq#%Sii.h%?H{?q&p~ ) }kZRxIZvFq&NFOxn;HN2{Ǵ[tɵ$ O:t*rg6ki=#٦2\ Wh`~zLՅ{p߬@p,Moxu鼶ktoGķXHԒ|٣5$>O*?TRmT9ɽue.i,ݒs}3uCo$?=Z3u4|;pȯYW֪[>lc4N]aޣoO]F?Ic44vw {=?ޣ aF|՟V/4$CZ]"h{kc=o_'iat+ɷ Z{ݾ_T8 me%Ƕ3gJ wP' A2$%~5`q굍:\!;ݷrWىc/-qIh)fϠͿ_UѼaף3<F8a^N#RvwQ5Ѽ I5ѽ{6:ǘkD2̲/Vr[ h,K)Nr$;ϰh.>>[R +.,fhU9^ז4mk\I_몣qDKJuL>DxGLDu7s^56IͭpX}6Ŏk];lqiu[J~α5ղ p?Ukp:ݵ}&JWkIbk'Kob燖 G6tlZXScgJcH#q.q$L'9XgWհCKV-R>O*?V,Jղz]da<6.kmvZ @;u<rr5,kCZms\i .f>m,Mmm{| k(A,dԃWc93+ou:uuXw1ZGpUW3=ĢO8qknY$Z&8۽6{ cO~ؓZ`AW)sNuIP?KJ,q\ڛcSbbHcwnftŬR ѳ_s9`D .eu%^Ǎi-kMjQ#Wl^8Ln=W6%{VvMZMxC]E\]ÁtN.YP?qawćW–ԭA'Hu)oJr_>O*?V>m[))I$Jp~1gQ`2QQXj\Ln_z=F8v"7ƪ#3#80F%cߥwmo6=,p t־8MݳI$)k79ѭo9ʗLtf_Y.A,ߨow]sefe0P}یvo4t0m1kYsͻ4A)d.2Kƽ>'=|@X]!+e2XѠL >s7Hu)oJk>O*?V>}egQVª)m" n=s^ի;>SSUb҉ϪsTD_?'. ;l[+X bꍷy8ʸ#*ADoTgb҈D_uY?\U?Q/W.p?*(]dO8OKv}U˜J$Y%;>SUb҉)A]]{gϪsTDg_تJMpv>>=P\:lnU]!(\U?Qd}ps'T]u6ّS1nsY=dH;F'8BIM'File written by Adobe Photoshop 4.0Adobed@     u!"1A2# QBa$3Rqb%C&4r 5'S6DTsEF7Gc(UVWdte)8fu*9:HIJXYZghijvwxyzm!1"AQ2aqB#Rb3 $Cr4%ScD&5T6Ed' sFtUeuV7)(GWf8vgwHXhx9IYiy*:JZjz ?ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{>i_._~׺{^ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{>i_._~׺{^ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{>i_._~׺{^ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{>i_._~׺{^ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^ߺ]}7{}7{}~׺p׽u~{ߺ^c- {5tm:mS~ ~mSe:M_u#},ϰKHE[6_U8v=&T_86[#}=i)Q[N?lb?їb=.G}?~?پѶѻ;AwR={~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u-+eKߺ_1O~ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^ %@9*n ױXweSA豷TV f}]ػj'8rO(׺)U^Fc%\0[P@*́ Zt~~mc2u.k4P? eG _q>_pXl^ S#c{ =ov>ޛ:w_>Z9ߗNu;̆;/mOfݥU?ۻ1GC.?{v`޾ޤ wъ+R" 5ӧ_T?u｡T?t[ sW#?0tٜ{sK"^ܟe?3׺!"Q1_vBƇsg6TuFñOʿ_a$??'wtaGv#{?hh=. 6mm]߈Q1 w}zJiq_G~v_W'U~w4xv}osNT=W:w1ݙGEÞ,}ʛF7Cwў [f{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺uiG7o~9^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺no^{G{uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺ vRR@7/SQâ$.>88ɨi'qGvOLO}_PbfΐJ4&ĭ›6Q6=-#d2?/oߏqg_:t|PQ8[FnGO`¿: ~>!0{;#)\s[%\/WsOﾽ%zӑyۯMS~pohួnM"]zѴy|:;<>SՌp?ޏh?!T6_yh>CyMŀ[~=<:5pt`a*>SD댿?Swi}ǐ+,BxݩǶMSۿ_Aӯy翅radz]hMhn?np^ez~=Im_+q_}[׶?ˡ>iu}g;/>oUrý}~=?z^ݻ3pqXo?Hfd(9MolE/*H1PHMZsѶڻgoBgu{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u;:,KH>e #(:z粿CO_eF#w*U׾qF^ߺ^׽u~{ߺ^׽u~7^ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u-+eKߺ_1O~ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{~{ߺUֿ?@so@oGUrߟ,G/`~{m]Qw#nS#ȏy+Ѱ|+t_@>s1_ >»(AM۔zjm܅?hF۴ÿ?}`WQ;vů?OaOA^tݻwae7]?Ka_3WH9̣xzyztzsQU+Crɜ8cw}-G/p۾= Wwߛsxů1*w}vXz =t{?ShtxayO}?=u[o׺Aί?V)zwdp5L>c{NXO|raYGOΊ:@?nO!OD ?foۑW=7}ޝn~ΗۇӔvzѴWd^VRz~}:]2?/~޷{e>v?7?u`};]/sN?zR'V Ƚo>] S{^׺u{{^׺u ֿx_eeXXUHfd/Z)Adpxn۲둞˳Fz"+l^)ԩ[GY{(ôڹ6T=X>voԫꆸV-n}t{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺no^{G{uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^ߺL;k+>_#ozT̈́MWPɔ¼UÑT?=~_-UG]Q8gQ` `_tji cPmeA܎ڃfk' >>A@.oGUϽ96+O}ۉOQt w#AY۹ ?ޮ=w/fb_{_{57}]w󸿈[?t^w.Ѯwytt?{7ۦ wGZQ3=Wٮ׷W!}xtlzfS#coܣzxtr:ﾾSvC"=OF:;?ן> ;s#[~׺3x^ߺ^׽u~{ߺM׺#avř?Oe/#xѳ~|>}#{o[]9m쫛y.u㛿rt]3a޿_W=קּ׿{ջ{aoOɽ};/a#*o[7Ny oIrBM<ϣ?t׽u~;acwZ鱗hŒtVvb[ +nQŻ"sߺZҿ/~]4?n]Qm'P=GE?NڸAI]Ogѷe/VﯳNz[AYO¿>g+W{Wi}cܟۋ_ٮѴ~ΫC?z7UEϿu׺u{{^׺u{ncue}ǰs(zس;קּG{cngŨ27B8r>SU֪z4/~}Z.oѯN^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u۬Q^){ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺MgVbn,?XO6Q?7bu-an o[޿˃׿{o.:e/g\_WBvjJyOknνnxPdp_;?2}h߿^Wv.sݻ)~ʿOE:KqV:wߏѴymol=W~Nowuw@ʏl^}~/Ϡ7t]0_h0ؽYmyGh߇F?}ܘ{Wh7h7=Zݿ_==J\ȋ=t׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^LoYms#\{߹z oZcT=o~ߙ8_6mop~qU~xg2,)Gr(t?]wߴv1FJyun74#02?S/k;?^={vܼxw(kI gw)n8S$OՁ۵òzWaۿko }^f?quOOns v=1Ңw^OҞ1C!I{]^ ^OtQҧ|?-v}-߈gE5}uC#c9AYu+/!ߺ]W_oOu]?ƹ  >/cͫ?\_aoGv߶^m?_9{+~Ίo?Te-2&܏x׻C[x:Bu]GY psяBnB,c⸿~7׿ɿtq#_GG!Whz?n_|(=tkь_׺\{^׺u{~4_׺t{t{>(G)o~5QV- .Wmo~)u~{ߺ^׽u~{ߺM׺A(?>׺K~׺xv?G!e{o;)cGУC#[ϱO(wﮅ[F^:߃۟ǹWC|s_{^MGX$o׺s׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~i JYt7/R=Sߺ_ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{(5S#6+:`APCTOe{8E2k;Fνn_f(;׷};ySz>7m˞ߴPԘw)^zB]Kkqy?gsUVl=!+:1ſ[}xmz5t%;{vO?ÿ/OzѰ[^ѱo[Ff/}NX\?_?_^Q GhnGqPf7G __={u7:!c?[~֏YwW?#ofw+НC}=7~QuܤvZz݅SoaKWWo~5(>ƽto`.:d}עC׺oZϴ=k}׺@h(?t׺wq__ӝw/=t\{u~'|.{?ò:SW[{˫|;թ#'ߺCu{{^׺u{{^׺ 7F}C /avCca/OA_tpƳ 6Zů:Fy>C~׺(.ߺN^׺u{{^׺u{{^oJ[%#5jaSz.ϖUe? [vݏנ|lGam?gOEMݾxb},9r~Z!Ab!OrC׺u{{^׺gX#[ ۂKF]nO ___fGFܣͿiڻ_/}M5ǿu׺u{{^׺oWCܻ*pvpNLdRE`Sb'gECvOAϡG?WfƏ!A^/CZ{gzP=lb^x?PW?鶿Fj:o٧Nt{{^׺u{{^׺u{{^׺u{{^׺no^{G{uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{rAI?[ߺD㱻knQ~E#?\{a}y_AX- n'tl>[B+s;Aw'w/J1G!*/ѿ@z']h?6QHSmGgѯH.Lu}qCߔ}tGCֆrb9 LovQ˾~Qw9?#+>=nGο`ױ:ߏ7q=%=oӽ{?7{#?tXahz'OA￧uƽwz܏Eϲqc³/{. ~>G?O{U_B[@P}/_ѴpJ{WՕoׯt0{^׺u{{^׺u{Z,H;:O}t O{^P/? Oß~.hE"ߺN^׺u{{^׺u{~^Z xIdE/ # ~y6~6QN۾ީ9=;9ϸWo>_ã6mdkܩu}J?(][FSa^S#ٯF /Gu/}t{{^׺m ?[ߺU k>wv_??N-ߨwnevU5+۠'@~?}w/ꆿ~y}{0s|n܏^;w%e?]޿6اwBw-]_Kch?e_o>іǦ?~>ζQgmG:svŬINL`u\\k׺=t{{^׺um?{LKqYKvu mGVY]_C>~ژ"~me=J8G@?pqm+GOv-/]κnRۋOϱVԣgn vt_cٷF9{^׺u{{^׺u{{^׺u{{^׺no^{G{uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{!\Rxœ#"79| _]2 usw~Β[Kܦczk*6XZˎ[>t΀nGv˟ߟ6:)Q?DZQUm} Tf/y_Ov~QzNBckP~/=t{{^׺u{{^׺u+(ĂߺM׺?_ߺNb?t{{^׺u{{^׺u{ڸPm?+{)ݸׇZwU}ѷ?O>cx'Xٻ{wa_r*/~Q˰^Qܽ ?UɃu  ՟{ӞtvoUetQУCW?~ף~khߺ]=b ,.?ޏn׺)=YU@aspz o֛9O[qz [E|nv)w/î(?ܾ!~}vtUq= Y.߲΋:kr5V{Lr9{^u(￧td25՟ñD aKm{?hFﰚtc6etk>6#_e[>Ίӫg?cVͿЧh݆w(wo'6*עA~`W`7 fUqX"mcϸx=G7 /.6HNT v܏cũSзjb|ЧC\+E>z3ߺM{^}e7;|vNt:臎tx[ ~]=osiUQ;ǿuO?ߺJO~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺZ}ҿ] Կ(uߺ_^K)Cߺ[^׺u{{^׺oӇu{{^׺u{{^׺uwȢ>6p˪45~q'n'P6Glz}ż?/h?r?aUm=*kktmL{?=vFms2ثtiWߙ 2)OwzoWvs_yf߽ѧa>9_Eu`}/2?/}8b=ۿ[ѿtMdvwZo?ܻ?߫9A_*nG[J۴qWrò*;-:tYc)9ϢucOa_n?>U?"Pf1_{{+ݿ>w#g?v^lS; ^yyAr??W?_{ǒֿ{|ekߕZOr)soӇ\߾ͩq{t?MJūWxu^׺i£Rru'c8#Ǟ_S~/Ϣ߇~S3+#eϸ v~+y} W;!O?O߳]Fߺ_òvSWH:s}o}]A)Ƚg_Eä^A3>/q]Co쯢Nݻ2?{)~zsw>ΒYc???yG˰]wyLvC.[[T7|{W}^Ũ|}ϝO[N /o׺;:^I{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{ݻdܕO ?{ ۨ.o}k{oӟhw<:uu~?Vь??~.h #d+J@V|+ܟö~Gq?Op7sw+ץ>Yd^Q}tk;޸qGeyL> 7A~o17?.|$'W<_A{xxh?x6v^_oqA)?^׺te[{9}Ң;~tuf/ß_wxut4~:(9A8QB:er9qwCw}޿gJC5׿Gk_ߺK͏rJ?{ϼ~:07ܙ?%w \2C]ǹqz[Iվc?e;^ywfhFﰚtw6>W}t2P{^?oߺ@?pnm}?^w/\ge~߱tzc6eM/wrϻ=v}ޝ >ۿy;!xq׿{/_C~G?iѯK%pj1q~?q{/u{{^׺u{{^׺u{{^׺u{>i_._~׺{^ߺ_^K)Cߺ[^׺u{;{iP25:~`OeBkây,mxamۛBG۷6îMmGsvѯb2mWp|F߽ϥF}cr,E?{07ڧ-.-O~]f=ӗn?~8^׺o 1*?:*/~}@k{~΍z} ̦K!Pgmh@ s_>\ݴtk69?}?~➃%dsD_Ӡ-sGw?E[_unNc:s2wt<{GR(oF9{(.;dq ?(l[)EG(]%_ ?{sv~ANnݿrozk/?=G}dqU< icn<*m]ܙA_?.z zjlGv q}8wuSvQc7Ozz{w\tkXzKG~yoIUG{w: #mё˞e^nԡ׹Gw<:>#2?S/m>Cá(o4Zߘ#z:khߺN^׺ui౹ ,ple[^8uSۿy;O}zAAj؃#??#[v?EAUw:tmq:l?_kog;z5 MLtn?ӟ5q%{xb{???t?Ղ`p?5yS?gSϦ_y2m sv~=h˿pt}}oy'Χݣ?gp?ͺ6ҠR?ӟu{{^׺u{{^׺u{(G)o~ _d۞ *8tTweW t u]OmFaa}ZN|xˌNJD/-6{ 㢏g:𝓌A^ ~={>j:ПGX$oN~׺u{{^׺'=oqd!'M'T6F5m{ǎ3'?.lltr:!toJm}7Ռu]ϳ^z3_^̆ƒ9~o?_`orld|׼EjuI5ƾ>ut2uG1y,غvKc6?ekS~Dk}FFz.{v*d?b? }t<Λ(wnG-ߏ͹Cw{]w%VO 죛~tUt]7{&1Y7>ѿ^~:PQƿߺIzߺ(ߺ7ߺM׺+׺u{^׺Aרh2X<>׺8?x~8>y=I~]*kKdp9m+wSV߹+Zdqȵ\m:K|cwmSͭo?>swCE/MF =?ps_n w??}׺=q8+_sVѻU7zm0}h(FWti~_Sm;lak~} ]ՋQފX ^TP pϿuu~{ߺM׺]\TmZEmo~S!C?d1v "ǟ`ztlh3x\{tcc]*=u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{9WU!G;!ak'?۷ckw?.t7}hz^l|Dy~G/|{{57#ѮѻӥF~n: ۴=^ݏ{W?'~w*7}VϻݍKy.Ww~kW_-0ؼ''{_gB} W{+nd.(27k*t?B09%I@ ,Mp,=w.[~va&YwpTUUP-UWWEA&!#~|߿q^}^=|v{mX杣wz6t7nͿ__݋_/]}=5/c?[Wzn>ނcggn?>|g5s)x_xz ^;߶޺ohw]/3avGo--ޜFӮ?x?S GWS.Q' n߾>ނŠ2\cw: ?=_{uun\z;?7~T/svxKdh-"{mFýgѴl=6bBg_?￥Guߔsn+oq/1q_}h?Dfqupq[_ͿaM~kWwtV 'a_aqg?s[SO(6F5?rCj/}t{pA_n޽n.+ۼ\nrQf]~<ьh6/ ~ǿ{6Aў~j 2?q?i+y}%LCcͽi>׶?_mu od!LBwɰ֝} G&O%e[E7t:b|+|Uz4'~+G~-o*mShFq_c翽aU?y= Do|>Sh??oߺC'u=u~{ߺ^׽u~{ߺ^׽t]\TmZEmo~|n߫!lXs+o_ϠP u_ Sq~aq+ﻒz&vGG\7>?|3b=!G,,賣}J!g7}eza@V1/_B}ʛF:_>e{_ٯF)Rjƕ?/{?~{ߺLչ}P} H G~#7uOWnWO@\p?)Rغ T_tpSxGk$N*Fϧwo??{ѻε|?1[0ߟf_831x>w䄽=W c**mO?_yקO ߺX5=Gwtan:kqۿ׷/j?k[Q~nB>~׺ y??^9_qSߺN^Q[A}t/-엢h_?>S#_^ C_cC?Jk8׺\?}ч@?kӋܻ._z8Spǫ>?n.^hh>G\+cۻ?˭?^}*ptǯiGFz={}O_>C</*=_s],ƭt:6y 29 oۭϩCwstv{nP_H-Źc i#WuNwF}kas?g^/~}5/j ظ şx#_}j~}ez\YSˑn8>;7~+pمzmڿ4=f/q1msvSۿlQ]8__ٷѷImwşoSuѯLg(?Vb ]@Uu׿gצo~wz^`_*ѰUFhw]~?t(-]L7tl?tPc+6;#DZV^^v?EK1{g˟[K"^,y{ϹSgRϼ~FwOcH+t)ë Z?m:.ϡC$zx 9?޹Ow~Ίo?NV#&/#??ztuNuO7m<ݴD?{RbC#-?hmeFnNw>n,Va{su~׺Ao;=G;!?ߺUѽfl:?_[ v_=tl;-zkq)»Owa?}?ͽw#/,la;;'qN}?)gл+Gx'A߈깻~dwlͿ.x8gwС~w!ⲟǿOﾾ\~΅\˥G?\F~uz~] \_K#3#~?=<:mtw:>csvlѴ~άf|6=QMt&{^׺u{{^׺u{{^黊Ay[ߺEwZ̮5qX'Wv݀1Wv݀U]c?#?^nnY?. v{}ΐT4?׽S?S#Oy^uxٞN~#[=ף]w߶^ '=Adq؏>GV/{ k^sŹ[ܫn|nICo|?ȅyo٧F vGMj3].F~nطE[Fo9F\nË+\(:Q@D'۾S}|w)?[7l% :)e߸z5/~}u1OGb=}f/~a۹{7nu>X /#岼)nAmw]?/ge1ۃ)a?aD&E6׏^x!{uJ<źt^䉿t?[5쳛vqhɎt]ӧuqaanx:$}z?߻}ߺMVh:Ij?{觡uşW=7oo_aY:?}}Sewo>:k}cv?}t _^SߺJdp;k'Ǘs ucC.<_Nk1?W{iCz)cHB_Cq׏E _ӟ{]vOqWx_vM/: u?J]o}W>[ߺJc^ζ}lF?ң|VC?5.y}7f'#{)pt2?q{,7?omswZ.~nьyM1񯧳_-}w_^oa.?vܿtF켎 Ώfr_!ьHe?S=yV1woў?}rCl-hu*~ߏ~)u~{ߺZ}ҿ] Կ(uߺ_^K)Cߺ[^׺ ?#omg\ kt>]luUۿqt*6U]=i>׶?o wP>DzKWq9\Gil?.:sfsh,~>]9^_ =?/yqҧO_og_~ޚ}zsvۙO#WGW6__+3a9=naDۿغr]_w}wP5>ò2um߾/?Q24tg6Ӡc`(?[Sxt^: ܸ׿*s9_hߺow+Ӄr'޶._?ï>r[ߤd\Ӕyu.v߈|ǹۿ}G8~M?=G}hFFN<Z{x_}[פ݂xb ~wz+?yt2g+5?)mU۽:5~;?IzܘX(nw6'F9x~o߷W6}qy[={Gx^'^g }OG~tm+jo{B[w?}I~XM?naZ/Evc[zo-#]Kn#VS?ѿ~>vmdv&d?ρs}qro vn˿uj]Y[nr?S/}[G7l;ORw0ا_N3ߺU.qWfr;,oq_6=;gmߦP}7X=D_c?~.]A-q?ix:vc0wS}u:~׏q7no>je28c*~޷=6AѠK>I?p8?z4W2?} 1{~]ﾞ׺9>^;7{ip?a{{^u%-.ߺNuAfo{?~{ߺ^׽u~{ߺ^׽t[uw/Aoz ?>7Lf}1ǭ#}^Ptٵ(܇a_v*k? q߃oߺJjZ?qwG!>w=uvs~~?џ׳Q}ϢۉP/ww>S~7~Џwԧ F1_ {uY;GN[qWe6?{5n{wtR9 ~?#MkJFnC%n.N4_,kߺJ|.q^Ou 5y\[=c wiSY}t˳{=1~1.aEaoo}{/M_fǗӥWC_Ӧ C׺꺿#_Yߏ*Zֻ1{gy[{^9_EtǮ[S?sݟ{hzS~?׷~#ƿ޽oJ?^ѿIz_ߺN?ߺMF?D }sAxW'أi>Пg:L| ܛ[u}swmA~/,?r/oetzk8Qu~>oϳʿ^6?|e[z*/H=Acqy*ފ_>? ?[8aKWzog{OLAoHl_#'Ot##ߺ\6/#Zn߈ڇQiџ^=Y w_>׺;i}ckp>ݴ/cA;dwcǏW( ߧJMŏ2_ogYCfGYODz#tQ$^k"h??OoyQ<8u?rz=1/{?yߺJO~{ߺZ}ҿ] Կ(uߺ_^K)Cߺ[^׺$b*~-ϸ7m pwmڀcUfoK?`.QܵswF7:m9>w}8v?. ~:+[qA>? &Cq|~n_ؿwtӢ~QGtC]wp ?OV}Nu9z]:PV=tW;toXoӟa]i_ww;OBsocC=~xs,Pf?x++\{St(]l^Coo]wÞtfkÏ=W7|'^]{w;->_ncz!:ؿbg?ՁZ|{o/OWկKI~qGOp/짭tWo? [߳ X?}/3G6?b{^N}:oAO]`6+n??_Fڿ?Lǰڼ꺿vw>sæͪ25 mUr[?((`YSyG.<6Q'G#?A)lz?|s{=cCoq_ˠ7ntdGϰ(~΀Fj̍c{5ҟɺ;!+`xs+n>9/;GnYd?_{nt*B\ug;~??nKav=Mwtܙ=:g;ĭ.n_W[OEu|???NGaM^6hz>}mk~}G}t*=l.pdE[] R^׺u{{^׺uۧ9Qd`?ul)?߼lc[zUv.YOt9d?_ϱO(ﬞ~dkrZtk:^#xKw@~}OUw-#=[Gꜿԥ~G{EtgwnܣjVѴRA׿t~C%omyLuO}[|?>y_yv;?^wZ7oܜ:AW>z.SO~裧~߬_~zMt|Qns>/]ϧ\Qhz9A}9*xt'ΚTCϱVﻏ?w8@鞳 ^?ugAc9__~ n>)?+i>+zA׽t]A1wW^Һ3}ǿu}t ao~5ֿu?cS?d?}ן~?Хӵg_GBmEFOz+'&w»`w뿀?d8p<h?OF{G7?{7>^5As}lzLWg>!.e?an_qp ?|aKv_{>*(h?_mtJ uLwK]]xovH6??uϮ8;PQ_= ڻQί޺_[~+/ϲnG]w{vrO_Ͻ۷] P紱GpdoޗOfm򯎐U=~GV/[?KA\)nTG]5RoN{;U #_G{H)G+{*;VYӎߛsnzԫnzz6XZT z4M{>i_._~׺{^ߺ_^K)Cߺ[^׺'=Alqܓ*`xk>۾~48U[^3nAOn* ٟf,09h._>g˰݇_S1sߺ?r986(~KsϿ~vl:k띥mS#:s=YQKw,=tw:q{ix ^rE(ڔ{^wZ[G>_Wm2.WӢGC_٘uOv߸~u)~]ω;K#ƿ{ܝM<:GTEuu~{ߺ^׽tdr%QmדSq/zU]Ӑk)#o ~?{9jgsYY_{/tֿTP}a=G(=p8A~mݼ^};G{ˠk+/裧f[GgzKj^Swu5nAoy??[-wףּCAGa}:P}~{^ߺ^o~)>?}pgM^?oAqn܍~qo=n۷E;x<f?qov)E{:{t_~dMw ch:]ſֿSӥawG5}_>[ߺK]?^_}tyu3x_?O~;n"zzsyɺ/_.ߺMa>׺oO׺?>8~]ht]?kقp9(Ov~Z=}tc7p8NjKN~#LK{o;??퇲Ί:UmWO'ݼУuPs n_oAqП~2?ObGA~q++}n}*z='}-ٯ(#^]} U7'z4ϯg0?aߺH f6^?}}tO`p?~K@_tsjpOne}?e9;&NvK?>s9߳ogFNPlk~٧F}=p8}?دhtomojASn=Ght=m6Gva6G*QnG/1ٟmGt6Ղ#v?'>h(i6VU+G~8:4a֟_uC/?~|=uߺ_^K)Cߺ[^׺7#sn>req^~coj gqov[@=㛿}o%7tc]?mw~n)@|x83??>ʹGoE[Fz4#;ft>_,ث*'z)W;~l=؟{9 Ȅ7#T?uuDbG~_߇(׺CСnDnL;pdGgx-ٮѻhznN=^Go\c=.?a$_=?[Oz*8;v)F;Wk>= !9]81/{s~uώdv-]+}ibq~G/[߷ 1] /ߟeG׺Se?g_A߹} tg#dwf_k׳ÿϸA/Lv?-x=蟧* m=wўޛ0t?dz,]?et'{]H=;GHѴy6r5ՙO$z;=a}ߔjq_w?oC&Lp~~6﫚ky|6=Q6)UsOU9GWwo-0w?_fv/A׿sD|l] ;^aߺ@ccQ?O~JQG}ӠA}?}: uW;oc^?/.:?wEϣQoǹP˰*{G~zNc?{{#u}t;;x^q8o nTA]ߔxtS(zx~;z9G/^6ܞ}}?6>] Nm~ߺF*~9{^׺u{`1-[@=uU9~m܆Gpwz!x3yqxo~={wz'8nߕ)޻⮃'Q<Դu:QTOx6`m$Q] <(=_73-{[ӑfnڶIw;9.aMP5 %E=oJ CpU4Tyj V8Ɛ4bVvW! _y (#B sCJ*âyPb/wy޻nlkC)&}9 ё?{ tMB>y{^׺u:ߺ7隳 E*htoU{_#{?ǿu/>xo{Z/#Ӷ,?ǟuM?Gdlz s ɋ}Δ㵟_k8뿰;3{P1?ӧ׺sotsaVx?[?>ŏ?#ߺw[O,?_}/?,裡۸h?ߵ85Qq?iOy}W!!;ߏd O}[}tٺ{g>׺ :?˨?.? htC\ G!qc>{O;?rym׺?},?[?:o;o{Gc6Jg׿T/w}k6/n/a?BR@>Ԡw >[?: OE|Pc?cY[s?w˿t*t(Z}ksSOG#j￧u_1Gh[O}E?u5'8{+=oc;V?-߱WF  ߺZҿ] Կ(uߺ_^K)Cߺ[^׺{L&ɏ`砟s׷VnG𼍿ܦcw?^=Wk*?8}-*?^(Y?W5"t]xzF=j~cv>9\WD5הv; #{ؽz~=Cwů{}<΃ 迤\Po~n,{v~DWzkG]:J;o_yY4_?VѴycocxh?ru5m@GϣK*ӣO>Ͽu[?[oWHoBe?quעGոcuG>me+ݹ~+K]۸,pm»7o: oR?O?޽;ז:7vاiRؽ:4]s~mѧV;K(ٯF ؂?ߺJO~!tAuj`2Xux#V~΀v?9n-[6 }?}<ݴmhw ;?޽Ѵ~:}H'/V;K}'?۟fubg ]^׺U^ߺ^n[){t/kr_~/vZ}to{Ap?aG{^y{~{ߺ^g9d8P?ߺUѺ;oƏߏ nֻQ^=Tp^DwfS"2?,`[׸cwz7}:;oo{ }]I[r6&wh͉yFh2"C M,9RHx$iaӖ.DdFYZ4gbH4aC\ E>'؍w˖wov͎{ܬ6ļv[Ie; gE)[{Wֻbuٛ*j|*)>B*㣗3cTÒX1!#x4g*n\[6߼&EV #Pe̴cOܛ?v^Mܮ,h/2Xm[sN12$Sh@,s xq{ޭepT(0U>;!Pgq5oGPU+IvYPܛs!E`hxQAȂ=ou}cm`wx{ hLַS}<9 YmcGznv};'zlYnټ_)0<R5dZPu^:q?>n+aY/_￧tQӮԠ?n?.]WO]oJw~/t{$}:`>³qרk?s{N}K?)C {5àc11x}}Aoc׊<_>8~]htPaןpGof{ՠw2!eGO[?><!.i ;/ܙLwQ1ҟkyO#zrq]]__Ѵ~޵m=C짪Sq+/<0}o흻֟GN Z_u}:8U[7zuZQߺ;BG=Gd?o'S[_] ]XUZ6 t>`&׺?uLwŻt;>ŠߏGߺK/}ug-+eKߺ_1O~ߺ_^K)Cߺ[^׺wp}*߀ \tROqjoq~Oqf;L|ݿ=?X{ svsprڙoq) 0?{c=Y7R>Mh?t~!7~ί ^E짔v!sE[FѿCG?}}Ȇ mo_!C'\ ??Ѵo+m=Wxtbvc}&>y7oU$ixŰ+@'ثh?rǣ]ьvdb^cWhrzm/FGoǯ_aOq~W6G-u~2ty[|*ܥ#9ŐL9ξ]A^G!:rC6Cm羶\!c,vd>|ǿm^Κ{#߃.AWh:*7z ۫vz4bߺN^׺o0?G?~}u_}_+?z*ҿ/~].yۘwOv}?t^a*u uhW <_?-ѲAEF5}'{/~{ߺ^׽t+߿u6?_~:Q}׺v^׺p׽tTC/ _ߺN~׺ ;NdvvNqT#Vj9;KaG?+w˰㨫H`{0q}?=E{?ˡ~SѿIAG=G;!NM޽?.yץ\I﬎Oh;Xso 7m=nGﾊ^o?»G(9Gפ'gnGǣ]۔zKn#߹Gw;'=khr<Z^owAmK鮆e_{NޙՏu?E{ߺ^/su]ǿuhYג7g=.P_웤=+=t{tQt_~߬׺u{~7^tڴO-=_,Ϥm1\웭t +~cK _^{]N_o;AY?xu1G?mu[)??5{ͫ,>/#fcﯷsҧ| _-y}Ͽo߈-p9O~mGޕ: O߶NAG刺u}fp ctGwttڟqCٮ^a_V_#?~>:og{ {w: <K{kzTWP})/m_?}o<#"?8~6ܸM[F6Q]>w}uNtgp4ru,=7}ޟoA}w]von??iSW@UzA~^Sg/اgܤmrO>Տ _~x*0(6z6?ZŻ=|6?R?y׺;a){#~}t{}ueŵrEԟe[6aЏ~ޕaKO}>kѧNt4t֟_uC/?~|=uߺ_^K)Cߺ[^׺KZA%#m;l޽uZ}ᴷ?Ϳ^ۯG:otv[e_mϢG÷|̎?-g={s-?cr#;]L>~;nf2P/^鮻7ߺAK##8 }w}E[ů>[ѿl"OՌWd>7C<2|SMȇVME|Pds{_vw?+?СΖ{[~/ͽM^@cgt}<[Wvݺ nB=ñuo>{<:9MFŝLmugǏ:}O-ڻ%Brp_h?gAmhK?9ˇ8bSTSHϥ]w>~?'^_1o~%+?9nOs9c?oy/R(NW4*umWA>׺(u{'cpty{)ݾzTn\Gp4n>mK2<?CIqA=m?魣e?vnSN.E翀Xc`naۿ:m)杣wu*mniѯK~{ߺI?ߺEul<}uw2?~׺S]{m>ǿu~{ߺ^׽u~{ߺ^׽u~1>5|0m71=qޙZ6է>s?WIce7&XVR}tM2KWLygM- *$jUE5>*Y]A{wَ͟Bޮt鄶@>7[,0s /2E~[O*YG 'Ka8nU#<$\it_دUs\>Mg8mzn}9}ϸ_]T\c1j>r@-h0NU9losZ>rHlN+% \ṛGVW@xk^qa.a.>%VI?)ieC}M>ӗ9{n7m`&V4םK$WCW"k6|U!qoMi3h7k/qx+_QS58ʬ0&:y!9q.9mᤷ8!jh$ u?v>/{',s)Kk.egn;߶wwx\[\B k.c1_me_2|_>}:tRve1w}⍗ͼk7?~ŸϢo}"#kſuc>ζѴ~Xt??{%޲{^P_hz'OC:㦼5{P}t2ZpdztX6 }?}ã{a^҂׺o?F}=uߺN׺oЛk4:tTd2/^={o;?}~*8~]?mүu?G 7}ɺCӭ\5o`.\~}צs;Suܾ?xtPUN2}?}?_X+?H_=uk1~?O}tCx[ߺk9eڿOg;O:5-a{&迢C28?yr|rﮌ9GhWKWU{{z?+=j?et}z)^m]۸2#^ͿiѮ~M}AߝVb }ʹGGE[F￬= qև8|==JZ;r6}w}&OE[^u~K~o Dǯ7#{}9?}o6;Wm/)u*u,w}ٿ^yoOߺFc/˻ߺFj?}ߺC%?ߺK~4O+$Ȣڈ} ׺{~8{^OZWˡ{ub׺ߺ_^K)Cߺ[^׺mߺAs+^7Z{j_ůWy{vw_lj wN<{~˰taZd~6V_l~#}٧F4=iqO>׺wZc'E{out8Q?ujt>;q)yhWv?}SǠW]/zat^tG?n=ܣurCp/nrt=?sU)|Ί_qkhǡVѻ3 .^:S%bՍ+{_ߺM[5vaX#]tC>zY_׾C(ᾼ>:B~`M.TTC{/~{ߺIou?] xOuD,ӗu{{^׺u{{^׺u0|,' Gml: ygY೻{mӁvYi;bӊxk(傰<ϼ/&mmY}۰ZIIF[C,*)WLz_yd=/hy2secsk=dcTA-i-1bZ^ϋ >V*}Ǎ)nepו{斳rgvM5siDr%T3ejHc4uŲ<{s.}D2$Bd2: =WZ43/{ǿǷ>}oyem=YY݉$-_.$7e;M{ҽm;ǰ6Dl5ۓ7.0e 3UT) Ӷރ30ƳJ0I\T0'`yqaHe%ߦJ6n'A`z7~5^.r-J%ZҤi$vcSliHKzۏgͮm;f=ҿlnu. ʼ.*\eOoz\Spg2c5"r8*O3EK JEl;F2M,r-Vc,XM  VE2 sA7/^\\\ŵXۭđ~<֖qMz[khHk~A{7&/ _wE._ܙO_ NKAM^~=tל#Ez_??)H;cON웤=5^҃+{W=t(?Vۻ?˭R6齟Ao ̧'-gNtq׽u+{O׽t]AG?_^׺M^P_~zu/׺}/?^p&ߟ>zw: ^/.ߺO?G}9:n(`8!?GIl{??d7{̧{sw}{x:tjÿח}~={wtzfN/?o?-ޜJ >_1~n/u :/5g'MOJ|!8ޝ{}}]mt~ߩa?}t%{F`6w6?Cz4PewkߺN#?uCa.>׺Tg0?*,_uao߰6z Jt cSp7ns ?o?^ .f/ܩz{^POau  SߺKߺJO~{ߺ^u=u~i JYt7/R=Sߺ_ߺ_^K)Cߺ[^׺u۟%⤯J[ks~Wgx>/_wpzx?[/*6ܸ lUv,y~UѧC&_aG}~?}CߺBm]{^؏l?~&+?׺VW{^깻apMA` h˃Ww?r3 ;7{}稯x:UPr?ue=WG=ۻحqm/mgcm/1??߽gFGc9_ #zWóٜV·ثuw>Γ|C\m역G?q;Ehd7_Wm2Fjjn2 Y4:Y}W$16lĕaz_K3&=s|s7[K7/-. S*P\ܝ_q}L.r=F`ʞ xJŽ޶2I\o`}ioVU@b7̠JuG p v-^;A2#p>3HIGhR)-"^~j"$Xҿ7엻R'ܦ>7'Ѥ7ui%_"Ӆ(!H'}/+sf0VVeRƊ.@ ?79gs]XщP|ʣP\X//2r{7Q$n#jNI ~BvS6G^l4~s=q%[cz ZrETa^iwX2j$*@AI48lo_lw[ 42% vd{aQ"cG4/C.J;M$JV}ٽپW\_V;[qw\vi"#縹pkn.%Gߋg|nѽFݏ^oCɍYqUdptX|5pI?:xK#@GH'z߶-M٘i Rc)L T( p佋xOm涓ۻ>iݠ۶v-ђcs XwiLVC#l jw+^+FD-'G^ݸ~\ݻt܁O.u]AyLwQֺsڵ{ӭ zC.z&V2 ?ٷ;wչGv~}[GϿ?y'ՋZu׺u{{^׺u{{^׺u{{^׺u{7on?'n>'u=ˑڴSn[g|œn<-$;kjM Y:HL\IBZZGǐ2ʑMwW&0wIC+o CVBӯnyklc~w{Gt?ݽ͉[hYnn)+[ $q_7=2wg-Y}þ6$*^ݢl6gpĐO\>%T9kM*IH_n.0;};!-J17h}>}㽧Hs7Y H/R6&X]xM{t7[|Nm).zGM0bRY_OBGrƵLްɦSڮjݶ.y#UdbT#+(e1S}\Em.Z›dYPFUCЕdC1*'WXY?͜/iVuF?f ;mc;/٣,NzQm n٬)P.- Ih傢8A.9biVQ(ݭQ]g*#A,Fr[_tgܦ`vv W3[K d6Hmb wI/w[GAuW>^}[ Y2Xje}N*#Ӽ%K\ϳr/Nsic.P%M PiJqｼ{?vl3Nē,o,k**%h9ߴay>\_ooA T%~![W;@ K5?g~s#_f?:46ܿgF/p?~OobF?Op7n@\%ˠ)!w^^? ~=6f/;h:\+Xn?icE{^鲻u^ߺO׺uR}gD{wg'MmON:z{iџ@ ܇nxcKB}}{^ߺJ~3^[Z?K'[4u~uz]RaMǰoZ^S?1_[:#nk=u|Gka{{AX?:Klz v'+??Y^y_oaG=ng7r|lF x:.T5 ڟo--Gߪ:7Z#w:('uKE.Xx?yg7=*悏Of/-]۴yL역Rpx㹏#.ÎnQ?r=X'N?'b=YfOaߺC%q{xߺM_?8[{9>{9[m-=E[F뮹28Th;A?}??ʝ=Wj>M?޽t{~{ߺ^׽u~{ߺ^׽u-+eKߺ_1O~ߺ_^K)Cߺ[^׺mߺ@+J<g4*oa|SkU[P8{_f]t_=uAߺJu4aϿu׺u{u=tWSic܇uuu;+#<~xnC_Wr@ h>`+1fO [yuJ?í+);}X=9b/-oяCNsvq_?<~}䋿t!f ~bҜt*:{g\_0{3gm ۺ:kukx,&fcX￶*^SZQ{ 75˧I@4 AG/ yvOnedyW4YIdZ"Dxڥ[Ve+E6)ғgAܻ7xF i"*mIMC=6a<ǧa?~Py_f@VAѱPYpk +Ǣq>NC۬rO֛F(FIش',Gĩ9 nnܐ7REi⇏ ~ffi}_nfEJrE#IWK*φ[Go 1[|RYF!x!5MjnIR.y{ʭlbf!UIzg bc'{C&st\u̩s"-7[Pdxm8.iiٍ+ǻ&9:dEЏOͪܚsԓv_{'fO0[xA= 0m85eaΗܝ!#8Υ vg+$xĒ 2׹%[ϵ6m`% r=G?}}-]T\.cdW+V Ш# ? c|+cc{B켍Ԏ_nae%5Gož$ke?w,b7Ʈݹ.\oHJ- <"uFBFT )G(C۝\XJ=:(C)YH;>cy ~A2n9O>K;K!ž7,lH"Zq׿*qu'JuQMf|{WcǛ+|V3re*&HѵLld{\G!Nmj$ IV(WM8_e.y=?'3m -c7ŭ^tKۇX:cq4E+oan{jf2[6g Ÿ:5 S7ߐ-s~!J?>}6}\Og~k $ğB '+E{P̅\Y>K/{tڻpaw੔`_wTz&^^MxT{#rum3-TiZ|r1rO%'/so.[xiRFs"8b8uU"XJ>?ߟ?OyI>®Olnz>SV?l~}?N?؟q_(@ ^5?![FOVѴy@?_rc>/?c0q/Vv_Wc?lzo[鞆﾿-{=go}tۺX?kwxu_?>/!a?O~.^(^/-{6{^ߺJ:Go~&>+/׺?ag=.V2?z\?{]N׺u{7{5{^ڃ+{J^K߰CO߳`cwBs_\}?/dz~ӾsbK}w:KSޝ({] }=n㿉_?G=GǾюcc??gz=zA9?_Uo>ay]9<\f;2ߺwG~WU}׺u_m?]5<*[/G@#_Y?_ԥ[Gy꽥Y}#ԩ՟^ <_?׺MA#^׺]׾ʇHo]]oN=uM4g~?wqxq|$~=g}~w?xW@r4xvB_~8u4r?g_+n={!h}ǿu׺u{{^׺u{{^׺no^{G{uߺ_^K)Cߺ[^骻~O_oNiLtHMH q߇^;W>ͺMa&^׺/{^P/=tkH5/#o~9^׺u{{^G!r?(T OvFSV>jݻ&2tcg}l=mav<^;rx|kWw8t0z&<>c/ow-G@ ߏCdh:Oŏq[|6,F]o#a-hC?t~WA>ȿ»Nz wԯ#sbиSD#xٵ3IWr},BȬ \yScݎ??uuO0}yo6oc5Fxj(hĵQN_F78rܓ3ޙ&Ikݎ'>[46Чe?"{yU1sF*LHE1p6FA[o7MCG7h]e EԖo"== + *j?Dxb?s罟g7Wg74r4+?|J2^bV*<TCyxj};_ 7ޙwfX;BVGex<b؟?1#ΘSܯm珽˚:˃<2-dCpP B鄅\$w" a۵z1nnv *E`PXٺr6Xp8#g4/_Q}RM4Ue$j,w5ꅪ4\Ƿ]|jѷv ͼk&XU4-}&YKUmͱi(uTx A#ˣ_y~ lo,Qj̪d/aU|lR ;C,kRrhNk\sR*|؇~俽SO,|QZGhg&,ĥ䵐+3{yypuopt *ir{Ƴ);xWVd\FqR)g)4J#K9GbnⅨԯ V(8҆#Tگ +[wm=۟[kyշE+[hIn!I B0G%x/;dy})swdzH?? ~[GNt ٳG^~>]j5`]:k,7V_?=h/\zoCuo:d? O{ ?w߽1l|ǓԩEuu~{ߺ^׽u~{ߺ^׽u~{ߺ^.9r˼ ?dj?(#h͹`nm,K›U e) bGͶ^D'Z@#P'RS[[7ܽeS؄EmHZn^?];odytniy] UAf$k {maϷ:g&;f،r7JofHSddܥM޿]okd+?Ⱦ~rz}צ?_d[u^PgOӕW:t{YyT5w:MOzSݟ֏Jz/m׺kA s?Kdo?c:]8Wս~[{3pOιÊtay} gk { uC@~k8S<ճt{GߺJ^ר?׺j}_ߺKN?{9wKc?g]XkOַvxYB??t')vS>e;y}\{#?t_1ПOgtnzKv6GmqaSmz F:uδh[.OO^]][;vM;au?o??wqzl_[_SS~=xtΆ(]oOB}}ts<_ۻ?˭p_3wkٷ^-Cn~x#Ot^x?1"ٯ(wh66C>w>_ϗGpv__;OVucW=XO?P=t'P pϿut՘mu#:m~}_^pW?ds՟->=s z(GӻD~}ʝJ[?\/~+n=tg(.ߺ^ [~9{^׺u{{^鶺QH׺{~i JYt7/R=Sߺ_ߺ_^K)Cߺ[^׺o׽u~{ߺN׺u{{^׺u{{m)ck}.ֻ@tRP٪T㢛7o4p/uWS)z׷;-%Wyߛw￯Q*7^~n[e0/~<Ыg:.&ew=m=9hka۴%;sˣ]1|ã/|3ϐ=Ã|͂66xgX\\jGt=x`AϬ}}':GTEIVTWPBde`hR A=K\~uxW 3<;gwv%ى$I'ؠ'f؉<{;=s;3U@UU @Eƽbml?ݶŬUYXpA#=v뇯RgݻOO 86Ф#NFztΦٽ;cou?cbIl< Xܒ$oYʛSmjԟRxϼy?u"vc*@`t(՟$lmg_?hQѸ0mQFż4CoFo;d*ȡ8>"+tOYhe6pgN܁@UPQ(g >zz>.vkgjzJXZ )y`xtXVY0ÁA?TqϿSw{!o>..۲^o{v{U}Eƅ'AnmXn]wޛ6?WJnMٞ)jtii7K,z%y[,n6ݖp֚H CJBE xok=܏Ei,t>$pIf۬s$;q#DZ^+hT`Q?ЫwC޾軠|gɿ7J6]cC}Amy>ӧ:9 ?ÞNWSwSn2?v,7:GцѴ~ߩѵqk?>QԩVuG_c]/׺R{^׺u{{^׺u{{^׺u{xu]1Gd] D崦fy?yۍ9y9v"ZЫVFSPRYX7Z@u7->lH5DմsEMrC;: ZJ_keAhd>C͉$КhO'3r"Σ]µ[DHҰi :Q22D[R)E6~ wr]_mɷ]уoQ,G&}k1Km>gzt{z ~ˬZ ՚2XR @O6~qqE0%];m; dZ% H͠b(u{ rƻu#J`thdqqXF"u5 ovoaF僧\%_G271?[ߺI}w qۻ:kw:sqo=ӽ6]?׺SߺM^GN_~ߥ 8a|Z:MW/;o6nD._3oѿA}uZDzNzTPak{F7^I,?u;N8 Ɋ}~W^?kBcw?OtgkgDzӟ}׽t}equλqz_қFvC-w5>$^>t磞 g⿃tQ]|ZSn3\_}i>цt-OVSw:7nGel_?oE;W^+CW( [>v{x n۹v{A+p oqO[>߿t:K+n·O{yS#|^רW{sϿuveqݟ5q= Y7{5xti5 s[?~?Xn߾uXnO!#hSiWBlV%Mu_vg?}|Ðބۯ>ݟ?{Gԧ?98:+٧F.=t[u^?c+h;=:sv7֟a/n}tgazV h>>׺=t-{~{ߺM׺u{{^ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺C(>}Mş#By[7m?=Ww7w//={F:0Mx{'0sw?rz*.װys#,7ero~l4M[{GNE{h2?gۗr?Khv}}ܧ?O=K][KGӦ~:&hk?~~k_)r{xuy}oZ[zP}C- m/L;-c}o^ ?kz_W>_g=.Ik#-}6_g=[h_gH]w&,d??zJa]W,_#ǎ*EF'Nx: t_s_Gb=H?6/NZ9oofz= [J֟^ObvFExLw\ Vѻӫ ;J>?ߟ?O~.=u~{ߺ^׽u~{ߺ^׽u~{ߺ^k7B>{^_Mۏ`N 6DŽ2՗C>7mc6/0.<Ϝ<|..UxQYYpA {F|w>ngF_vӛIH>  .8Co&I5i\^y9otW]mRܰ#;5 4j[hc7>Ordo 甦ܭ_ QLk6k{Q.|5$4}>\ɞsOo$geu 8U'&c7n\ajP}`_Wk|譋{CoU?Tm-n4^:AM >^U{xB#n CC\9Q?/eबO4o5*MDUTPa|2n v>wNw[fls* }7U9Y' X!ETzjFÜ'5=J%%I$ [%KG<mOZO W Z]g1p5%Z* \|9nڔg} 2 |T.c73lG%ń yTqE9 MJNcpզ>%A%H`I+yO7hs!%s4]5_mnk}Ԑ[ yֳ/GkpmR=~;Y?}oۿ]hqw{q㿌e?xgE%u=z.??:WߺJz }?Co~w׿`dO߼?=tau?]'ߺJF}=t]zxҦ~ss_YG1g6/k8S ?9Gp}"웤=*3u}t _do̧׺0ua$_g=.DZkb.ۉO[<ι3v/1}udvs{Ic?1js{O?Үu=#_ɺCb rC0Qmf} Aem?o?.I~ǯ6/x-m߷ttCtYϵuwo>׺LP#{MlzK [E}_r?/X(M]vC^r?~>3ö[|v?HgB*Ur?~~n z^X@W=gB?gM_o߳n=tXYFm<[{^ 8O?ߺ@?}t1}^-{JJ OߺN~׺u{{^׺u{{^׺u۬Q^){ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺o]A+<{m֘!qߏ_`qv=9gt=Wxe_koQ_7ʉ=;(1s_q_ܻ@"o#]Gzu/m޽t/??~{Kh,c&I ?\onot)(>1;#o{}StdsُO?nG|ytr:wv㿻z}?.w}P}LwqWQHwqtxŮ=ta$_ 6xb.ϰ%lOAr#6ffc=ӟQ+0~9}}޿= }u^Xo>9Ghw띥ԩuPtS.?_ݻc) ߺ?toާk=4xUOcP?r>ճlz?OsORC'n?~8^׺u{{^׺u{{^׺u{=nx{^dv q돯 nU3#ptop^o].|M w7TpV;Tے}x,x~{-~ɞrL>s$lB"ƀ*,IÑ^J.KkunF ͽfݛ^坢np@$n Žv~o>>y45 8ZW{ܯ=%&p[2(tKQֲ2v>'UKv j͍6>&vd4TRi6)S4sښ=Sߧ\oi-MA+hCC8Cv˹?&? sWۭ[&mŮR$lZHg)&Ƹm涖ԋF]V7;[w5}e=VUTS׮bht=EEEDAN~`82\HAw"t $I4X矿]??#P=շwע=gGۂ?qMQ>ތgG}[2?;( @)l5go'O[5۪Q~FYAG??{Cֺt/#oOЛ{&ALv?-oD:^?u?_{^ 2wsw=zw}zΝxb= C_~ ׺uu?~ߺIN?m{=P 9җߺ^׽u~{ߺ^׽u~{ߺ^׽u-+eKߺ_1O~ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u+}.Ͽu`q=g)?䀿zz߷_qO]@\v<]~>?m?A@?gCi,wmQv_{5:54۵Xrn[Ww}/g3Ox`ge=kH:tdh6g9OatzuK9)=4&SqՇdo_l׿u:d?#syհ;>[{67׶?v`pؿ{[Wtڸ(}߾~Сs!AOս{znGH=Sy9ϲh=v_ç bůgkӇH>dk_n=w/ϡjS7,??}}*6rsʿ|}~>#ide7Bc=c<uz5=XǯPayO_?:{/_Fp~_}KoU8v7z?:7Il,{*=~_.V?bz3X^ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ@Xמ#nyRE1I4=Rl?q?\ݴ~,/D1y6[qhg3H#D7f}wZN??_罜Km=뷳ݴ򙎟\}2 D]NL4cEOAAg| s`jEhE*3#yϻ/ض ;9F$_GSdO ,c]רvG>?ׇG9|Pw cp>㠷7n[mwͻ_:vF/πٟw{c&eѢ;o)N???o@o_)m0tlc^:DO[^~ǽY;f#K/Loϲ]:ſֿN_׺lݸ /?_}l? hWjo_m8B۔zpua=ztcoNfc~}?~w?_Kgo϶wJ#=}qtC@>/[k~:M[W= +ݶdw?rK ~?k}J v/q_K]t[}˥7U̕}/_O?{87#ѮuͥsxtZn?G^ts!ƽm)ht ,mDZ_FyCkq辽%PV[[۴}SߺkA;jov9qAG_wG*~-yo~ ~FǏ/]ϤO}G׶.'د2NS{ {n'W}z_{3Sjټ26/Pht= Gh=? r=Lw}'VxxUЫ!ߺBgu{{^׺u{{^׺u{{^׺u{{^׺no^{G{uߺ_^K)Cߺ[^׺u{{^׺u{{^׺i[S5{gmr9Ÿ<> ͑Y|^'z!UI \\AiWS$vѡww!UA,ĀI &m;NnnDZp[<8(I,ʑƊT tu}_wBݽE{?j<~Fػk߶-˽Z^xZuG.UӫfӫKi+Ӂ_>{>waxU ^/xz?=Tֵ/_Ɍ[׹|[psvn,vQlm뷱њ9 enBifx"jr0n/v%)KDK53YE N~{=om$KolnaDH`eyfav_C۟KMYY!|va5CS,/wwv'3BD.b!|4^&!_ڹ[Sp--c;ZNwUŠ%ø@Y@l'W8LZkv%6G>Ԭ,OOW ͑lXr"8"~ט,5nu&1+0t0BCH(r:u}nFؽ״{/nx"l7]KhjD.Dk?ps\_GqΐSV箋fd{o썻Fyallvklv&]ٸ1IO_Qv_Jd[[H&=NC1uc؏nwsi `hV֡X{$7;}[} ܼ-,FH.eP뾮b~noh{Oϲjr8cpyM>GEEOP5EL5tH~nЊ7131 𪪌KIYUR̯>y-W#kdsM qZ-!hy䅞u w^n^?I]ǐdɍVPX>l5T膦U$ji1ys.Ĭ#2+TT H:Pu4{O} hyۮv++-jky{[won.5{y-DA9?.>tt'T㶿BIVY1Mj|M6N7<o[Ӑ;o'cn0!hZ<!h߆[*O1%WZaph{A5$޴9M& zw:欀CT9sE&rȢ{%(KZ :dO~{u/ݛIuats ڞkKo$II-᧔\ kKuK^wnd:M])j+w=6.]7 6G1a>j3ȍSic\enWwWQq M+dUPI_5S:Ԟع9C-ӗ9{حfXan"߯^O嶸6x/ׂwfk-ixTuN_ll'cEn)`Ŋe7E@i⥕kĢw)ep#|m~-ooa˵0U!:̊ J(mMAg$RDpO۾܀kO,'+! ժR$*R| I?,oL<;-q&iLR/ A߿y48{ϻ6=Ǜ}59]UX}`_3h'ƺ\V{70ɴ*J*ǩnXX]NZփԞ~?s70Ug`ؖr#ERGK'dqӌ`BHyK_xwDg~C#.Ϝs Ihٔ2Jn"0&N7^W)w"Uڔ Dۋ#O)1W4,%TAOOR_7}KBFN{fPRk-H{}7j=l9Kgsv y-o&.%HhX.Dߊ$v6fAYh>ߚGrJ܅8$uy \74Iܪ ;*HHJjm:TAe_ޚzٽ;m&a-$%{{eb̑O$Qv4bFvXZWhFݚkb!Bʵ49fN+HIV*"y)e im5%j2VV4` R* =G_:\ssr[Ep!%pLsI5%i-xvY4 zV9;xc^ӧzI)1ؼN"!WH3CIO4A4eH6nK !jjjO& ,FOAo`>}nˍ[ o IdHmm IJM=İ[k{qnt k=3a70 gTPmݹCxZn"Vϑ C~7}d۫uyHÙbզo&X;E;dmg_-@gUMbIv!zjuuF@yӘƉgr@$ӎMrx 䎒Oh}wa=/de%f c?NO]Om^٣o6J~:I2.#SQ1u"'zybAXݛ}Ǜp$QREE <  {owخ|Gy;hn3$bY.,DO*Gq2[`b|uǞsɱ(09Lf0$*MvWrl,Ƣ8Xs-LS[[Ws2+y,޿BuUG>>{iO˛/nu{(k]*b]MΦW41֓ZOgo-pR NZJTQTLRFʉ*: 9qnVkWRSUe 2*0 a5Mξs1w'.\m<ܘ.gs\\蜵ϜC#e`He *ꢶWީFwWC5lPYUM<}Sa`#RowGȾ<ܭ DQ4Oi9iZiYWIyY?$>?}rq].#}msxdsc?[~r/6}{!60tm:ؖ۟u >}G_vӴrJ : u翼7o)%z QOT{1롗9q;q)隣:],ݩ?U)gZw_GG\tp#^?wߋ{*}5Hn?>n߈鯪9,<~63׶_çv:+h??{mwt*5K#_.зϹht=M;O՗l}p裣h>=oСGE죯t(`>Š߯t׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~i JYt7/R=Sߺ_ߺ_^K)Cߺ[^׺u{{^׺u{{^׺OP={5]t㶥lߧ63er KWN{gź@Ǐpc}/7qr#'D: ƒ&)c.:h}lv[4H\؈oar5ǎykpC؉w{C5kgŵ:juOCY܎Go^;%Ce"MMU.;{ <{{)hd&bUJU!'3-4̝m˓n;vsCv n?Gc-ųX =Vw~@|n׸'n:ֿj|e)4wsxڸ -.scC<9XqK5=Tw7{]>s-_AuP :[DeY3}=ڽټOʍqq&w$F7Kub7IpBj.,Eku|4!_R,Mǽ]ݫ{`om]'Y6u[1Tvݨ]Ckۋ)1pK E)6ጨ&cRW>{9>=%zgvmfۮ]4(cw 9=mvv{b?]/} i펽Xq6cumTmܮ~x]cJ n_PST<>7w0msݻih(qDe_&'L?/xsvϳżGmu۷ n"使ylp oD[Z ~u-M~mv6׬}a:۱;5ZtjE0ъ"b{Kmٹxྈ^XeV "&#P$u6qu;Ԃq-n;o6F`#GO.|}5rOvu ،̝ +v`ݲ h'd5?Cr;l$g +I*sF4ԋXٴI{o}ӽ˾ۄ0o/2,wK[lev}oYPC wD.lw2v|&{սu6@E'w^9 ׿ݝ{Ǧ?BjjhਯΔNKuN{SYdviTP{ >uo/ɜ̻T -&m63]=/^{,V(krN~Ml[gD{sykk{ܬ6n}Y;W"5'O S 7V_$wآ t-?luEYlm n]>T8~c5ڙhcOQ',6@p@ra ss={l[Z>fawx-ZGۤHZ]Qb]kxm,ޝvu~,EUdjfߘj-ø/6,ɼhPhai%P"k=s>դԌG2ڬpUiR^bx6{{-^6o'2GxۍZ׸EvĶ+k^nj-F M+0}rdzzjL|1Q7uL01IE32%EW+?-;%RC2Е"hYu0Z !>"mً{wVQN+<[tqmJb!:'g|`@ndշ6 }"Rxà`mL5hT/$@Gl1^l]O66ۃ4$OXtcͯOx}E{GJ{>{m?vg 7i _˥dUCZR՘ waƙ$h@ ksO(lkY}oqM-dnUr17 ZjÉ*zsSa^dw;O'h!ۋnm -<#Bۼ$8 ϳsF&V@hGjqry}ZNhs;-+Bt Uf U vyAw+6gb=u":PJt)6ES;,gTd?.>+^'og'}$o_+y :S-|}E]Tk)s{{oͯi>ꉳn]hMøi2-u3M/$Rmwtfެb3dB3mNʤwJ€oݢ?ӗ?4|̛ oq{iwy=c>{oc՝g ݭIla7+,֒AjC?n>笆-uw zUK[^h>:ꬵUf;˸PyRfxhmV+@b\#4ubS6b@%YS>_~}{bs:ͶnIe)d6C$yVK|-ٝkfNbr5 kn\f`lM%LY D zbmly^eJ)fy$Hu_PA+ӿW!svmʗ<>\[ڤW[u{XլPfeJ#< cPsw7%csWmz<&Rc&m. *T9ڌ-:Ti_!r1-m#(\  &IR;ݟ}گakQn7MiVݗk{{k[[ׄ5<0 ЭJϙ8#`b~ŗ= fǦ۹.cncR2p:Ƞ RS&9?{{-mimPYuS"ҁOݵ{'D[cZn[ɵID6sH Ld?O~- gSmN錦ql}˴sGki(0r=D)~MvdueSwK_ۘcu`ަ7;aۥo-dH"[xI+GV(;?ho~Wn^vr{?'[rwf-zz _ :JBh޴w{zfw? 㷑DC4r$Q9$qx[uO1y&?l?yoCn{{5mB u[Iygilntk^vFFr;; ŷ7V݌Kf+pV*Y&+HowɳU府xneM*)csii~a{ym{fo?.v6h!e4Xǧ)`>|;lEuv;+}S쪝ɵi6Rˎ`k0UC"nY{b[O %d3@tfNjFV$ N} o_~?[%6ҒkGL/Kms [ pb2"gQʟݥYM_suczn\C^?tci )iU/%j+kiSLbe1'di h/i]uTC(fVu+B Ny/߽~o{,n0[L &C\)b[y`G[s#hïsctm6V{mRe.^'1PMQCd*# utfVL YKi::e`He`A N#muw]c6ۋ-H.- sdXVI#uWGR:^Gw~G}-m~rӇu{{^׺u{{^׺u{{^鶾PR?P,8}o~c.9[l?/s'l*t=fO1­qas/^GRWM=<;?8wKcGq˿Wsp<#;"_ =%¿#Y_-ٮѨ;C&ݟNW OyoF>`G>>_l=sQtyN2E9=Om>6osIVA4rRFg.{u{SŪel7I%Ed}-O %`߽d?g?_b.n^=afzt0;r_8t]w׏yxuxdrN=m?魣vxW2?_ObnW?_?oJ~_?MZ}{^Q}t[K{?S/+Q7}Rav&~|;1le߿=@;Ѿ!̶Qss+){/FG7э:?YSp9}_Zn:KgqA{ןDZ(nkЛhr5m]}ٯ7so﮵۹zy{ Kw=m܅YOtvC}n  ɋ۹K9~"[9zj_V/1?~.y}%>ٛr?nb1_|e[>ѰG߿.}R #8>[V~ߺ*ܻ/h3Mo5~Re??+z,ߧ=]?{?sЫGRz+8qd>o>lGg`W}t[n>Sr|-۸WT^[{~lXko[Fng@ڿO>N ؚMM?{o~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺! _=Sԝ؝شVk);wf7uxZXA]54FOUO,>`;y[qm|QYG4CeC#F6M,o_r7ܛ{Mqrt̗uL𐲘pxMQGǎh4"/˅n\T;m `vcz?S>?l]VLCrFZZhib:-t~!wnR,Sa}J9:M%9SMJDƋuܹ7۟UvO5mPߞ/C4zw -,H`G-=[ͭGywV'ݛ2|z ٝpOWkbK3[+a fmS &NTc[)gx9e6;kcFEG>$ȅKj?Sn瞽cv~o6݌nwQ]KmZAUu=n'Fc/s/;~@ni'݃մu4yU9NѨ{ujzkPgk+9O╲KRݷ}Ulj*@AjtH%bėrŲ}N^Euy7W"KvQk$$XOcp(hHN_$zn/Ba|p:w ]a7>/xǰB:Y_/_Ϛϯ{on~ɔڻ㯱0S}N{K5oپzÙqfVE&<*~wM}pᵲKu J*+xU#Jۢ ""r/voFl>MT#_aJ%1v,~C0 U{>ׯ\J{p_*L4>`^Oy>$|xy/-C<$Z3&ܒJ 2C$Aڿq|nq2dC\v NRBh&[U [w^_CZzW<4 ߸wO6Gwbmc#-#w?2FIJ GN>:6c;Cf7grmŒpj$X:NbK3xY~Iym-FpE{^yr=oW H*ϱl?[ 2HK_MW+v_}e[;^=$)ya, ,y=wwߜBG$֤Ǒ >gU^sOs9v5 )MähUa"Q)B (i_N.ݩ~;u.ܐg$ŻBzdHWX;=Av!9D>¡OR}4 yqǶ9\VsP,`3RC\ͻlH^7r ޲Hr { ~xJ֜EF=~} >_}p? XY?v'Sˤv$֬dC5./[{Eٰ|6'6abYyMGYͦZgf=kV>U?f>#Jmjv;培,UUY1 T;K.y\)#?bMvWq{:eQgBVSb?\=[ܯr?Oܮk'ߎTniCxOpl.uU K,V,c5{v,C;`sK zbLHN/Ԓn?rK?^eI{/ʿvVrUXLUY:%C_"=۹0xLpMG2G,$qU 潛T`ϯEA-~On49ZV"5&N +%voU]x{`v `n#_S  N=I>iÈـ?gmk܏e&埻g+y.':ã/A[rYTݼ"Ipx\m&HBW(J?"[50}jڽz7w毻g5>*YY"?֠E 9Td &z_N2!>NnQ6-,h8.1 f?PiFɌ9<ϗAr?߿CGW1sM.@- ԫUaAV Anom΋?  +H|CG@X r+Ty7y| iZq5'orr)amk Ld ceBQՕK2gwVۛ7)S| y"ܕ傥0yvԧeL|lnB)j))ȯ sٶ -`Q9e $QÆweuR_nѷ>x{wnoei5a{',Mm,n;%7j}I3Xsawh_UznL&/Siگ*y7(9s(fq{o.Fk!sdIN4+MO_xOh>~V~{s%qOuo>;0mi|omȊdÿZmh_)l!7#=nٓqwz֯;g*f1S#G.n5xg}>y{I9Q"CxrbxZ6eD%#dwgvq{!ڥеnŽܡpڕ eur5[Eԭ.s}p?;[vdf흟:emͱ؛= pty,mbAQ DX3T:μqo˷wVWrG%R̅&AdCEWF*5F?ݟͧv`w`{=pnmH⹸O}kkKCW6n7>6>{.;s]a}ko૙Vi/xxok]:Kld6GY̚tvN斊!cUrAK7-ĜA2ң ԃՖWPC#>%v˨s[2oGs}ʟC{#[~cݶ//۟Oqg[|{ n/{߯`v`뽥Gn#+ˋ>}9H-!~~7l_q:vn)Б߽zmz/|Zt;?{9a=zHztr;w;~= mş܋?gB,@G={}yx:03?/_⺿_?yF'ЛX?:Klm *G=h\Oz]WݿǷ&S)A۝Tߔ6] {ÿGW@QTҿ/~]_Mӣ^a)㿥Vu-]{?E^Qp8G;o+m@EOFF6Qm{4ӡڂPRP.}t{{^׺u{{^׺u{{^׺u{{^׺no^{G{uߺ_^K)Cߺ[^׺u{{^׺u{{^׺.//"ڛO;gfo>ٻZkvn[ݬ0_xYҲ9xN3{4y_~bx'3gc6{mӲEq<gN4ozmL/ŏml^b뿻8սֿ##o}NMn;vSGM[=ni^Mv#z[vm/ "e/xw7Ed+fGR=u?^VlNv})`G7Ef3yl7;bg3ͷ'hLudyHdpq}۷.[xgmJYb93S n%\3s?}οy/~Y9K{qk{ﴆ tM ^[=g?taEb~Vnm.>nawݩWat`ol;Ob$TX|\T1DZQsLwsh6Gqou$/5$~H$r1g3?{`79ۚ>ikt6S\MinѴ#Eܳ\[$3Ӫ׳{be0EX#FYy]^?{h:qZ`qឹ/٘=qx- NrE#:+2w$[Ǥ7u-yfG<"4@]-F^rE[? Ͼ}&dyh_,eOAm'Nu_x4J! H@40[GE|7;6֑;,T;Ʊ,Tpb\i_i5ӵm׸Z 0 4Q^>]@ߟx;kYyiϏq E($Mql[5$ ¼X~>{cbv,7fH6&fEy'(&2$T U$ޣ;MNG^1SH^yg;9O?_na ♡?wd(hǚb$ Js#oW3ܘڝ|ˋ> f|M?K<,LLerIk 7njڹQ,/#^x? M>ĩZ Mʮb~ZR\kb 6>?t݇x5VXhl}ٝ(HczôiZ5Zp^Tn3tڶ-ds9v',$5Fbu䊚Nݧ3}|ylrc91^)Qk)^Mi,BX6g>ξϿYqMlYO)ڝ ;{ol|*HJIM&51-nnN&IN~\'@7O>{O_{3o&?& |O9o e˜*䅯PjC}Ǝ>GkgHpx~5K-HI d%r2_sdnO/S7>؛_j)w,^sW}6Vt0=E]6RjO}׾oؾF!s6/Ŏku]J;{P]XKr đ-ڻc?'>|*i};ookv8{!6ޠ 6gw8q)=y*QC4a1^POO)7s BOM{;Knb?#Vvïn/;#qo x}?<~+ߘG_wrʿWw˞^ ~?ܩ߿=_M߇iݾA!/7K[w>΋~tN'9=eqD7 #Aami񱩧_Y Dso'ܛs9J'ۮbh䍅Uх#=2 5EG?Gj~e#ײ0:SQ0S5M<#1$ۀ?I*NS]GW_yuo\=>{U˾ߩ,* iQY5$`[}^/g?{zϦ퇸t{?t=g(7zkXs}oӣn;/f|iAٿS1=+a_r P_&~Zdsf 1ۛGyunˠîz[#+oqU޼*6Y=X]mq'ܫmt>ѱ|(x*ׯ {d?Qֺicp5c￩k+ڸ..{Fz8{ol=Y w\_xntEsvŷ6?[ѻ΂.?)#Ob[^:¶\_%Ngo{Λ(0oau` W⛋]vy/裧<~:a> _hwG-HG6Qt9@9@lF79fǟ[c?Ww?oE_^O^ۻ+)?ﾷ޻*{_YK![{yGrJ:qwk}wv?Zc-{^=?gE[yKoe<诔o@2`?UЧjmt(Q?/~8{^׺u{{^׺u{{^׺u{{^׺u۬Q^){ߺ_^K)Cߺ[^׺u{{^׺u{{^׺ql||ݷ{~HѺ3Rdcm.98ᆞ,6CaeC 4 Ziia(swnw ̋qݵG4sF |-!T(P WĻ8w]Yf3Gs<+oO<<+|(+X?|꾦N}uvGRIqKh=6V/-f e;SVM=nZ{|%r.nx$ [ǸrG$dLPY7>t_ޛi~Mkm$rwa!Hoa{n$wk^OϚ7j/SmΞo/v{s{i i`tuGrICOUd}˾slgg[nVWI$VZss1H41e{6 N;zlݛ2~o [|ۃy`잷ݸӏ-ZʙMd4"xzOo;wm{OeiY]E2+G` S|#{!>{fݾ )xm'+{9]Gsy#71I}%yv7ŏ} -#Tx!ݟ6of-ճ15Ϲ&*pp͒#y9/qnAmla۞Ӻ4rﻄ{[/hjt)nH]UDY"P)y?yBk}oyp_w,7oL;fu_Xn0M,Z[6װ[i;»4 pv˃lɇr }6'=>D7W]eu%AvJ ~UK5+j7FRC{ݷ5ʲE*2];qu+QЄ!FѨ۟fXc%5%tL\qt6RhI3쏍[i1K]_yPx`uFH7(067h$kf#p4_o><{q3vIv@rL˚F%?;[z?pe}sxXn]I]4&mTGqO\ }yޱyPY=梥9UC jF)'1ցd(XhsdnO"wٜ 0ES;E#dxBH'_kրM8p']>x9?rW3ʍ<"E̍t~<)fP]>R;xJ=Szz35>*IFY)zyG7Eopl) iRHA߻F7nBbM5Ч5+c^9TҚ!dBX f9Ng ~.?7KtXyrpnJH<@pIPK;pnyr+B3???3}>[/ޗbߺwGSwm_ptƨP1¡FF?ѿ̃Zz: zdKfc-PVϝ=AuϼgsW*}9^H_myrA* UTeY\dh.,>OӲ:?|l]ٛWtQY}?YTM,FRyELvmimvjꈥIP*SSz_n,l78A,Kgao%<i$3+4(LDQ%@z?#o͎iY>OnݝU6Cqap?'/IK#(i򔕆E]U v}{"m,%9]+z4TP z!b{yk=Ñ7l˽MMգ[v x?iUmgpH&;z|Oҽ|]{ɰ;{g6eaxN}׸]ֵϒ*HԘqpMAonզϼӲAfm͜ȏ2s*U"T8 >fg6~W>}}/gywMr۶ ieM5v{m4RMHu݉?\^퟉ sNi qUkݙSMݛemd!zhptrX<6m{O0/ ~y|ODnf):?+%|t{GO`r5?ymvOh/um;fqh}8q{~-e{ǟOw?:*/~}A샎˟oaO,П_C:rb?Ǐ񳛶ܻ&a_Gv^Mw; +_` h @fwdPɺv{ld]ɐؔ# UJS_ܸE7(]h'cO#T5C1[71Y#F fQ'P`: |追w#ݭ~[[k%[ݡThmgsq k9n.P/=Ӊݔ[y9sOSwT9t'dTtQMS-$V @*A^q>s2kW-\ܘ.'\o@Z96I!y-mY`9-#.n} qobÞ_f?X=5ot7g 'Oч7M_MŸ?ܮ,g#z ~t<:AF;{zGujU_y!9?)c="q?{}X'w>}>>ܟqSa,x?w뽏۳F!F7nfcb:{R^ݠ }>dzMwɁѶxݻ+pSlFz#wu,ow}ַ}iEqK7GwoBv]m.O_q\ti;qա}g4u39?1;wxc_,y&/yF?Dz}[[?=|8}=7~@:Tt~N:;_ٮzߺzvR^=py܁D;eԒFa8>Ў=U1$?:icx?~׺68uӏuN?3<~<{: sn?q:2;Kg)}?{u~sGhz9y#7Ы F.~O=t׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺZ}ҿ] Կ(uߺ_^K)Cߺ[^׺u{{^׺u{{^׺3}?w/a=N'd;pu*-Q>َ‚OU&rjfHz\}>{;d_ ZcBҀŁX4O/\?s_h9Aa{ybpr+qZC\E @^[¿'ϕ?! G{-ޘ7n[zaRm~ڧN3YjLE~^zltkJ ܎nawk[hY- o(rKႱα azgsj;,[^\}E퍖﷽K#x]Y}k$pZM׌ v!hwqnʟ4pa~z݋9li&;slsx L'TԌM;Ro߻ڒyq,!usi=3">IV7w6( cw6w_SXbݯEV69F)=u4rK*Ɣęi.7~NNV"tBtJ'&o}vn_{pS4Y°&o!9~߽$> y7VSvdS`nν!QO.nvOPdxjQZO Yo쮥[ybpGq+NI0BJK_۝ofa3v]Eaqw[ݼBI6i#8*wؽg6{ZkmM1o]e fVejp)j!.FJqR po/wpye>30-[EmD)"kw*;|մuMl%M$=<3SKVxdw} ؛S7I| [}~iΜO9gg A$**KiBr|ڝO2_ w.Gxc;_Ȏj糸L4."y~ӻ$Ӭ/}yݏiy)9OێRG9 !JHXUYB{ޗ_;Km|<,>6ytlNƥ lV-qzg#=OrzWع9"9KZ !$CH)'-2k#/,E|q]NMɞW`n͊Mi+݂(r"uĩw]h_9RT򡩨I8 #zUȈ)C[QZ4PCj !Ѓ:i~-=_q0ۛ/4pRQl 4cV՘6۵PW|,{y>rG3ʧ8oG[}(/E$ʫ%xjˢ;hyn~c6r/ٽwi3bDH\u)anb{5]yg[#Gi@Dv}˝?W&G/A5aв)Y9%^2Ac??.>S$U8[F4,eҠĝu";;1]@^T[o)" MqLPj Vߙ{M}yT7#8LbAu/Q2Ⱥ%}X"עKn;boy6X$%$O̐u+fFkvNoًB첯>c#~Yu>sJ+1>";2lVX#Y9p̤7ű9]ppxo **'k"VUA76mBo;'U߽'sIͷ\ +AZQʼnnR]l#uw^lδ嶶øpxѱ5/CFEŽVϴ{-1ܡ ~!/tϞroSoON1Z2*x^ݓ{߷C[Aiy.tcIɰHcDC60(Y߁t$>^}Yc=bi6=5\|4YmX}Ӓf-Tˡ~T>fә9oȪJ=2I Du$+;[ r? ckoydInW =(1pleQKo^XX^?ϋh윷>Lw\^n[1k/WଧThd.RSaR;?#dV,,."hCxdXg=_S6z-nvdlոmۅ퇁}V2I!ێa<_&1_$~@v^oC[Sr;5GMVＮػFjNlgtXe'*&Ȉ}?uf9ty-1ۗ`"asۓ)? }/ٯ(r_ӡW(^G\9*ܹ#WuxҬyWwA]ߛyjp?W[/M{W.KvF/n˯5*|)9~mͿG|T`;GWO66mO}~f\SVG+?w}^>Ü{{F6QSЫJ ?Ï|=7}oAmhZ|'s\mm[s20vz w#RnōfVBh^Xj`R~ޙT}4r?ek%Gre;uB]h#읃=OCN1ڵUɓwu~˿|z?{:RqSy Ń/#mXz=l=ů5htbE/tů3?ͿݻtuR^ߛtdq_ЛE T[Ӥ\`1-?1,ǿm}E[E6jPur_3mWƽGӳ ~l?S[E[~t{#?΍6 rغ_AJ}de?kÁ_o^ݿz7W7R2F8r5#`OnWxg8U WeuBoPb3"9գOpH6ge*ԏG#T}9۝wG&`iF A4 7v]nvf큼hw$#<8I;Kפ/ ?7{&SҀ`}i~nGKɾ{I)rqsC20b BTmDGsg:._#=\gq_?'_<{*a:*~#|udbo)-9w[^u.<}?u4lA?z8o5ۣGt{{^׺u{{^׺u{{^׺u{{^׺u۬Q^){ߺ_^K)Cߺ[^׺u{{^׺u{{^׺ԓoW`:#:f;[h4=ݲ%HU7a>ClOٜ\u }rBJ6`F{d$i^#08EIjFx?@/~紜u3x=쬶 mwQqm;vx,픋ۋWI| Ϝ{ w:f쯉Oo;gha ~}ݱ*Tc'gI0kMquX Ԋ x۟p~ygح!bF5=PDc<%񚷇)}>}^{\[Uۃ[ 򽵥]nR~tBKvunP^jn??~7n.ϔ߽s]1: {}FZ VZ92RԃQw9!6[K JڳIm ℕTRt6nz:gıX u*H4mnrȱ,ekӺX$M o9?ӟwN]Y;{zmH+kf;ln*ڭs 8:YPضW媤䣏y=k%6bha 9Q_RL{{=۔$ݢdqm]6X-Ag;ʗmleo?O'\1,GO?C'Nۧ1wTcRc9uNԽE͓UG?KLdK$ <ʶ-In? ! Vq* Y56g e}yycߎg7-Sx,wY7Y%}mm!0@}DsE?>7oܷžڸ+} ;kx=']d0PfۛwLXi!4uuYp .WkvA6ETy%C1y @w7?'_wmߟyRߞ /eH6۽ g#-O+f{x,ൿiT|(~έxZ쎻\U?vR|墛&R*zH&5UYS?{4S\ow>5ݭۉ u$PXA/@X*!wnKz/if۰o%WD~վfK`Z8$X66vgw}ɹ_!ߵY="koݵE( E^LtTXX(cGE%44x=ywi꒤RI*QBUPNAi6i9{o{gىvq "+nf+yWߙy&ye CNN}=-_ڸ[Yi|~.rP妔OL(m~vݏeٷ4)Ii L42ѩpA PPR|tNc{y{7a?wyxeXnrص4*cf3!Y [Q ;ooop냅{{"(qYLEhunEmFq3Q߸ݾ9K`^iWخTP$uR2Sn;` /_wgh;#yv1>yefd@(6bԓbC|yyWg䝕ƩXb=I'w{{Fn#Yس1XŠ;3h,O,bAv$uT?0~ݕ:>mv_wo;[[o٪&ٻb)OSJAW6y<{yw@-Ap9Svs_y#yNZ[q˒14pB2 c@YT|;Cr#7'kdfwz`mްѰ%f=e$$`ȫvb.@ÔŴ6\z޳rKsE(^Wyy`K,048.o?]3z ˱5;6Ѕcc2k sǍR=>'}z/{Uϰ+Jom9ӘxX]]6hFT|@u>+І &Z)?X(YYsr.V!c"<'~&ܟhk;5vxcYduKWQ{4rL.#=ڛ½/&+C̆Ebig^/=d~e.F7 +k$FB969j^a٢M##9Gɗo)C7-iաi)#MLD8:h\Q/˻fI 5d5Ӽa!jkGkk Whf}3$iӉJ߼&跿e~w9}ʗ2 |!#=5ϋp4]+94XDZ86 ⟷X#JI޿bntx:J# 5#2Am]:w&Mê#Q-R}]]vP~Opz?kn>\\_ء>[dvE+ܬa_x.{G2O={{k|>w}m8gyX"\P]7"bmݭMB xjSJWi>@zh}242+I]j^Ϡ>&|[WN7us;kS.Ჷ՛w/U62[^(w r43WUSOU5mVk+?KhXWBYݕ8~rga[\9ش`l-$XqݥhFK%į,6OwqWqzp@}] {K-w~ j`p]ޘW;gh|4Sf!2ZL^Ns7(\r{qaB\jIH?M,"EL*E*uϏn}u??mx孟-ٷ6Ym;.l)^l,S6qqaq}eq׿<_&1_$~@v^oC[Sr;5GMVＮػFjNlgtXe'*&c^Ph7KwCv #V(UF:U,'ށ?xodw{M]nBgso{oVWjsx\:$0F$Ir'[Ju~{{^׺u{{^׺u{{^׺u{{^׺uk uj<_>׺XMŏX۾Q^#n,\'wצּn#<ߓos77,/Wvݺ*~7]?/߷/^ϓ !l hц_ݏ0x~_Mt>#we!>$BF:1U]ar4Pz͏>lA^y ^׺K`~oߺE7cwG#_b:)??}:Es7֟#:ػwڛo`{#)wZfnQO7t=?}qWhgA^@'<ߏcQr l a{-}oz5ݿz${q}p,?CAx?{ c_,Kc9~{9G.^sGV K[o㿭OwtR|o!q?qgw-oZ\/MhJ{G_*+/?~swˢڟ4K}U}x˰WA]ߛr:=d?*)l=atr:6wq+_O*7]x> <^;xs}~=t|^Q]G?of;gN`<^G?L8n魣Nu 5ݿNo.RugtZz+ݍ)9Moa]i)wmǣi[1ۃ>7)?ϡw@jw7o?N?{Dۿ!/ڕӻF@Xo~ [#O~9YK=Lu]3*ڼ^gXs=O/ͯ;)砿p_?mϲh6Ч+?s#ثG\:{Oy)N=M<:ιofO̦ _q_7tH>Y??mϳNQ˱g]h˰ӦG#9gqGY~y_kJofnإ_ija&=L?d/u'9#Hyu9CY:J6t SBFGUσ^ݽw9K~ylo[?e!8eA=gu=u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺o_gva'ecV%6eNm8-0g3t;k#*7nц-ڊ,%l,ah^G{=77O W fHev,0ήc_ܣ9{s_(7$'۝[3r,'JA xlMmqMm,.5ۑrd/K^in }lwzS;r \sѝȃOQ[ N/"e޹ϝ>zﻪZ7.i GV9g={x7$g/r,60nVSo6q\\_\OoOzI>Q5'a/q[}um(qxܔxOouSŚ#&# @hnٷodٽ6]-ȳ pd01cEmAU/}?ܟ^3l][)(nIvg8"swJKl.erMooA+Wcع̮֓{;;%>Vpy eVcԕtɺjթ^cb1KtYmwQm$H1F"H+QI!p+ZwOW&Gk=r<~e[[xX]n,G@S DY'^mݿ=/Y\㿗i²(H ՋJH;A`m~J(?^d=Ko?ޟݯexN4!K9^f yeݪѤ+r\񸶆uw6́X, I=#Pֳ֑CY<*Ț 85zS]_#{:A DQŁ-5jV{#gȞG *eZDR:u6TnpWwiyKbmj c<>x/{df%Q[/&XWfw|#,S7vWz/[#,|&ۚV! 2]f^$k # yVF+<ʿgY|oeGm{k7*",V/2}CGyaS@v+GkИR|hݻ;h{/)4LGUHy6")fJ@FShٛQI4~3*@~z;1r1)013}1" ҚWfscG~ 6p)ͫ|n25.ۚ6Ƚv=2)b-NR^Ӿ\< ?Tm2IzL 5 |CGwM}G I#`֜I,Q±ҝ.Av?P \Gm~''ϑ?QW->|3ap9^nf4y`PQ%Ě#*WgK?m+r7fQOo.0:~ʣMJWWiڗwf6EIȡfNK݃G+9Ϻ3|baei x<':dEKZK wUC EuW}nG[߇nlT"{+3R:i$sThu P >ߝuO9?GWgR"&:WTf_ " 5,kϙ[BAmNջ|~RIg 44'h;l70 Emk1A|iƕw9ɼ|7ː=s?ixolY|)U?Rv#.cb7ynY|B (qCq@4]v&Q'5N_m,}ڏϕG2?DG6Zy2쒄VTwQ^߷=1{a, 6BD05PNݷ:f?qu)##>yXP~󼩽fhx)9cp$f0 "DU۩;%[Xmͥx\/yM6]Oi`Ib/֦BY5'Isg o0 sJ℀'=/mwts2$@rC4\,M7-q⥥C|˷>;VKtlnLT;LXI5+F`}A3sjr`^G#&7ԾUEE iڶ)ozh9$.a1"UkN%Qdve]=˴v;m ~}5IUoL.h*͊r0F|dMз8{;7m~W''1;+vG GF QU9*,ϺsGr˻MEy"\Ĉ2"X=)"ݥx9Ⱦɦ/xy?V/.^nGu]OmQ}-l,^fF.Ƀǂs@(= k|==z{`[~{';v>;keV%Yiiiijϴ>vgmfUK+L$TP9vg5'B0fh??ݷfn9{;Q< KO[-a *x( oZ׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽t՗6[?ߺD|on藺+nԦ1QGi[Z?stC=~;G/;zzm>_麇=w|X>wi_L_s=vz*t2t;3o amhKC 9W{1~KNs ]3!:om(d>%d(ᔨդDܭmɆHYM52?9q?Yy`ߓ-h>^U;FQyKdy@V!fY^WMhgVX{6סh7*A{v^ͯܙMAp_k){o\Xmѯ\tm,ux}?:w?/icx}?x(u^~?e?E賧.}g<m^vs?65DZ_B!Ӧޫ;s}hvZ{=]?wp}Fuo z|{=}䵾k>ݸof?.*C^uvqӏmMz G‡=[x7~=?RzWqd?"?OeY߾Ί?H_o ^;^?_7w⿗V__;㿅|?߽Q~ WiԩV -cww=9?9G*mxg;»/Ǘ7]_ܟݿL?sOdtn-^8#}{%޽]Sf3OsZI۸d{I~ݿl?p9ϧor_XxtKnG79LuLX?utWt} _؝?c_7n67oK\;ߝGop(EG߇VC{z#_.OhzN{! s?=ѹy]AvO٦zKlzܗmWggVӴ٧F KSoeE_Wˢ>׷7ntUnV z'ҙ ;C=LlbN8 JO.PWaBZSָzv8 dU+ _R̵R\z[=gͅ[e'FmO}gwh>z8#6fy"I+J!E>Muw7|Wݯֻv?=e. ;k*U8 BOF2AKS2BR0I9my`]xP!CK 1 Ҵ?.uڽ?qw{vM Ti .eHVG6jƅ a<?꿭{˭gXo\KuR2LNul\Ty\v|޶-owͶ[[կlFZH+ #Pb3{s+Zs6ZʲxR41O1[KxkKVhccNؿ(s|(+ɸݳy=)=q{ dn2;= "Hhdp63ikONjg;7-[+vG}}9Wkr;fFCed6>5D4%|4υ>ybZSXmI: c1 H́yJno_|v ooKlm&xw&ByEsV*c8% Cy8x񣬢"Q.R1Wy]m{m;luؐ~$w[WKzQ,g! xNt{/W4[gpn]vwh*B塦Zjp6.xdMoRq,_NX%Y4'i#SFh&}w4{s{-7|m;~7a )&ڭT{Gw&wI=m1)?*`wgsnޕy0Gԩ#^zaPu7SBD$a.U׸s󜡐$Y6c:߀{/bN0 >A7eBn&(lohMNϮW}嶭̾\ݾսI%8G=€*w6>ì#Z]֛}B!X?eok\,潱WzeP$'umZK_ݶ6BN' %YP*bTO2<[--bVV] 7n><7{mLs 5N]Y 듔4/4~ NMoE-Ni6eeG8%A r'hS@u]Caa)! -Rzbn4I x/9~|73bbX0~# pFF+,J, w7g|轭wko9ݓYbl桩$@ I75B6>jxp>U#C7ϑ"=s?k <7Udn9T WR?bn=Ӟ?ّ)XJosfRi\2!QrX_+[IH&H9R{?|.gp)*!HļT,#s4lTC e 0DNѻ_|mlR2n }._%lus_b-r2@BY> |zݹN߿zwcqI 9Q,̥H7%wI:yV#Å󟽯c}׽e#9G[hV$i{sxG8Aakv՛{ŷFfY#FvdRb"Fi _.Bl>d+ _?Xmڷ7? 7Fs7(R1CMJsU4"7+9?|kޟܙ ݌ڙK JEE&f6vO+==%=5U5Y*頤yF=;O.yۜ$KM rƠa"{jUJ }y m{R󷼼(I=}T-CHI3$P%avs[>6: ڟ~Nm*Oro퓶#rcrPn KdZ+IAQ,t9#9j:a;Zrܙ170mc&)k!`;LhDQ#3yOw'N|Kueq][mMf5C[{[ɭf5{9m6ӛ?7M=GfnUklV_#{#ڛ3w^,x:y]宒mW܃}o[ ,bXG#34 PQA$p#xgrǕ3_my3p w;aKẵ!;XຖI$Y&HcKVk<^{{^׺u{{^׺u{{^׺u{{^׺u{{^>,v}AB-#\e[:}e}zwR-؟ñQ ?[vܛ7}lTg7gb|ߟ,K/Ώlݿsz7:6; AcΝ tq cNj?ëg?~A r?i/FGСGx|_h?kw}GE9[ c￯[cˎUa?~os޽JG7g<:4N#/fvz yN*l=gCn#ӋsU9f]/(~Sc{߿_[S.K{C[i1C+e_={=:)]_?cy}{*8~]W'*<ފCwaFӤ7n:tm?M:o6z?7}GRM1jv;V/x_e;Gmjn'7Nt__{7z^?0/notw>#k1x?q~or΅= {z[cdz}~=aV_{1½ϬX|_\oJrhz͑#+n9ixzu*6۴x\/wmqOqcL_?a)w_.?ӽw?ט{5Ϥ w?^d!ԯюowgu#òXOΊ:t[wiz?}owG}1~W/m_qA*{n밎^/w5ՙMq?S MD=Tk9Gڏs}nw{ph#.PXI ^!U U?6Accbv6Of^~&(渎9,Y,Ud-\$hrͰ+ce?l{s|dqSvb!Uk$hgceXˮ$6]I"FªAG_'|#O2W4X/3lŕ:ซąOX5SR;)蹾@?;yMw}f۲1yv{Zkc'r;R3hd)2*$..3M. { ĻPm(d)1PY~ҫ+'Eڽ.fua3WݽwO;[[8K|igiW;nޝ?vg{6lc:me$w j:"! yV? 9Iunܷ}%ݽŤwI([toy]]_SMƮ !8W,=7,Zl7nmR1`{a=ܶ˸pܭV(͋? %n흱'xmn'^cN{hu6gMQ籴,zz|Nf%L\Gv;$<&_8Ŕvr\%cV$wQxsЗQ=)d[nl-ǽ9y[)ִٔ윎B%(:^vWmVZz<7U4(宦~r۱߽I>ݧSVc06Ζ:̠y|n2TPT4EUIԢ<˛--LKU$v,#eC&k+^{ya˼ag-,nmgܯDđ% b9,VKV/#>?9n`G;1Tcq2&FD _mNټGIYGJ0 #`w߿_$bSm ٣c1i4Ds>wUvGs\nv۱1",. \ S?r?b__6}_p}' _>{[09$:+ku@g~T:2s2.C4{v!^Sx<t籺/px4#zy׮svObjH>P:#M#jirR0hjfOӦ@h&[7~,siTK+3.8m0`awnC #Hrԩ9|z ה{39]x8lx L%[4Jw7 +L@c~ZOcD$ҹĨ|xu%:&/aػؽ0#U[RG4MHZ4~ޱ}WxH1pUѲ?M6h¡a$ܰJB]p{;ƜO6-^ݗo4o5$~ٯ|댊u܃w;g#s7_>rVFb(k0+ڝOgZvDqǹUxj&C۝C{5i9:xUSϣOl}͎EB1"F?iLס?uaڛhcM׏ 5J6 ,_},I*8Lu^μ)(~\ H[č#Ϥբnn4|oXeprm}Fۗv<197qQ1XS)Uz'i쟱?z vNA},.MZWUzwO,Gg(޴F up^[{O$VжW{lwi7ۨ' ˑ?VkJREA0ۿ 6[;'>}͹vhﭿl4iqōW YMIQ;{4R5ݭ\u$S#A PX+!DnYu׾~v?y۰oW}2^Y~վ{8$).L6= %qsl>^뎒|]qWk7[ J*ז\|V(8G551TOAOY{'mVYI)vHKa$HQT`Ri{S{~bfq[Oa>_ouuwimY7e?rWmGWՇOUcӽ/(?v:8tAv_װWcأiGF]/?ch(-Sf@6SϰN~#t[ܠΟ޶ lALP4?#oK'ߣ~t5aϺ. GW{+>] ]P꬞+>t{zsW6G#hF;?avnw??'V%Pc=ӝ5QV]o>S׿u}7rrr}Ѵ2mE6Z꽇ş=O v8C#`M~=U#_9-vgZ[G.HU-1{omaw.?ߛ_ ?￧SwtV?CǾ7G=6?ثv{VUMku^{ {{נ}mu~`9n?⓴~yUV4xm7y?SNt(g~?W޽v{an#3^şϢqClͿ?_~>z!-#A{w!~ϲot_׳aGWKŏ5^ɋmq|?tQ X7?_#FG߀:t f/y˯1c~(Jzj\|c;w.\9T#w O?Ců}]KvWW{vSn¿qԥT޶= ~:?.Ľ Ajw^[G*? ٯ~}K va)S}r8=1r'= G>9ū?u4e??׺oGy_],[׺to{ Gwu}u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~i JYt7/R=Sߺ_ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{8w&q):׾z?;.3o kg#Sg6<;'snͳM4AbhSG; -OIWvĩ֟(P+4F $ KT1uOnWkG67N}Mk{!h6\G]z׶ַ,k%_5۝Gָ.ꎱW=Q׻/vv~z:n bnUq}FZdHReѶm[fj֖…,V$TRQR ր u:;[Žp+ =̗2+#"IJJ5ydpwjm _}9E=-n۝8|sUf/ƛz흧`gW$8A,T }K'Hm߈,#"FJB_+{wו7 o{XK* ̲岹V@]X I~LS7_$.:bbw;kuaٻ[d=dSuR_jhv'lSɉQD^x+'؋d߆ʷ֐E$Qͪ4!AFcE2AZ2HwrIwskm +˭OK{s,u}Lsi,럎_7xeycieMi'Z|Nbv|;+̒S濋?^Glv\{P_Gx%#̎X1'2D&'އh{dw˶Yl#z--溕e[VjY}$ocY./Ows}+ͼ14x ro띗GXr# y & O[MԔT5%)C>'Ouu˛*[́#iCJRhX!PP%{O3j?y=˸M[Y@'ti"yR=i nΰq H몞>ĨbɉuW|~kCvZ(gqMCUSI#=5MDRs-շ6z\WK)  5 RQfBJos(yNoٹ-*I !9b, ' <1HGW/do}ϫq]qJL,V>bm{YuRKURMNߖg ! @3UҚg*v$xc=ۍmxmTmm #me3Ox$PG, ng(?];|V/x){6IW aacm>@ַ}Rbl=ŁydV,{KO]fcE3;K22?j;?>D:>] p;o粒v\F:yCgǤsGsѴ T4r6?Rz}of{o}׺^P[~tc#{WUdmn8~wievߥus bdQ%:V}PHc4{}c7Tk1K]%#yDHƪPns+sy5onvhGhV]B%kD9%gzv#oݸLM-U6 ݑ]& aKC&*qJzz plefոX ybKXmy}.,oxK4QCv?q__?􅡠e27-׺1}ڸ~;q{] 7/%v}׺k1{?^`}UVA h>7Hz 3#&Cܗ9w\3_?/nt(u>sٞ$/cUdvs!??~mѴ"m+c`Ņv~NS~뽩]z'ʶ~EǦmSv}gE9g+w>ٞvSџ=8tV??ÿ}nCOnCt~sw!kA#]hv{#bK ^o^GWtcwZ:w_3?;`Uto Ud?x?h{RWv6x{+7g:61?k)_Ў/@ˡVѴ~އLsدN??\N?(ݼTmM?ѻ<G?tpVtR;?.9a^oNaݿ,c?s ]٘ /rm ?=êU}7bgc_{}~ETzwmtF`={E7JGر_;!{/藪r=cgGK_ ?zt]/O??{G*r9?ciN{uwן}g'F{G|~O5ݿ׷~#_9 p}]R+nGvL^8˟/Uh,>'@AǹSS@ J{׺]WPbEǿu?[5{?C??~)}u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺uySߺU3qT)Ww:6>x ȟN_-l=32LC\ָ=|ݴ~p:sva:>qn< -?_h~Κƒ ow!=?OoZ>u ~;v_/}S=*{uw:a{>c8׺(z?{G?_׺q?῏Uz+Cu=Um18=fy\1RCeqOEh))bvFRK;-Oks Km"tp]Xee VA=/1r=پ{ŖeqH)6Y")^92 ϏFٗꎨ^mn`}A0(mlѸiyöc)W>]V'#>tqa}ιCx˿tanw1_4^{Gi?y͇yMŐWWFòt_l}S~}}w8W^ ߛh2?/>FwӧZ*n)ohz7N;xm~}9GA]h0O_[)Q 4)?>,?~y_웤=)/xߺC.9>Bog0m_z[7v~Ftocǰt{WnF?p1?sU{uWHzth6ľ{y   ۭVzT9Ӣ?ë۝qOx%é[okͿF/so~W7m?zSxٝi_í>o6]]h~]&h&S1y]JAWou'Z |{>ݿp߭u^dx?SSմ|?΁5׫(T: O'{Gu{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^OZWˡ{ub׺ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺uk K)~?G^tU|?=_MòooaNQ6߇/t2gߡ۹{7|?xR}KM⿾#_UmBz?sU/3va?nUͼOӯG,g_?$1> s#>K@ߺB#u}tjM~) X~|׺^mZ?~׺!ӗu{{^׺u{{^׺u{{^׺u{{^׺u{`h6d+񈀱~ʷMv 8WPG꘷g }ww}0^jc?ײۉOEǗ9]_v?}E9W`1gOרx[Pų!#} zw?}W-܆G羿xOa]{tcq}m s?~?iumܟò?~|r*3?ms׿aG[~׳oM~> u۟tgH ?<[eڿ?FS\MH'^]gldr)?>v!tO}wux;EwdF[_x`?9m_p~߾]E}oů1s}xz^'^*(s-ãG~:Fa{sw_ѻz1* v{x?3ѧ[ <&2w?Miu=ѮW=:prC]ԿOǿu(v&/n?}to]/Ç>⮣/nmwoq?i{Ǘa(???߶_ӵu#?>)"}ofo#G=ug&SY=?]m/PnUm:/vn{(0?k7sx6<ݻz)in-WG#x|?+ꏳ_}A97C=|>ty[Ux}9g9FO#΃-Ay\)״=#_?}t(n<?Og[zMud-?{=_?7>hw[GuZxf?~9)t=:wnG~9O?ߺJO~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{;Z/׺{~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺIu >~lYMŏO@uf׏~V_/!5_*~]Pql<ߙLvG-__Y.)w=9 ??I{4{G}^gO_)~i5*F7{[o`8>N׈ |FD6/W_A_o@vb刺~;עGF3w;=GC8WnzBvkáފPCNzT^ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺU?_UBϸ! Ig6:b>ᮣ,6b?=v~/kj}oSp t_G:PP_ߺC ?_a=ۑ[dooG@F_7Yf??qtU6?=t\_?[k{wgut,?u_{5ݺ1v=Wr?ܡxUwt9B^G];_g=.P)?-_?A?/~އ|Z?t?ϱ/G]:vIf?.Gm$/ϢyugwoͿO>>9{ۭޙsó)Gاz6u_x?۳rO~+)^wPmLdz=OJ|G];ӵ8Z?O Wq˯o-:+?便oFh~3*6i/th0}K_fR[ߏ~ ɔȋmw6lz=ϑA}w̧?tRPmft[2wʷo/tYx}%W'Nuc96ۻ?:khz]~ [<Or(}oE/K'_Ku w߳ȡ?蓡?cT{aCϤjP9~?ߟ>q?i[Ǘ 3mZk?~ʷqW^"6~/;et'`a!}ok8Q3?ϱ?t 29?>bۯ^[G)y:ak???sORV[q:|7죢Ǡ7ߡ ?u׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{>i_._~׺{^ߺ_^K)Cߺ[^׺u{{^鶭 qs?u{_wmF`LceWo & XFz_{4ϯ{^׺u{{^׺u{{^׺u{{^3Yr?ǿuՁe{OAyL,'oP7|g^]>/E{_l>c?+: u߅zOߏYQՂWg ?>ʷ~xuUxw{*tUu#G]V}oN ~G=YP˜~>׺T^B۹0>! Q4?# Ǹ_]uv|;1}>3v?~.cǀNzTo?;^ݟmOC>?4ϢC(1iݙ]VۯKϟG=3"THݴt]7G7d?~}Ïx׻ܛzwKҟ|^GoϽ_o^|TP˯a::~ߺBp#9w@&}~y{uto;?Gsh?O@^Q]>׺&Ű;q G}]l=k va+aEp?+#aӮݾyټΌ6?Vsmٯz.1+êGf?o{lG?c9Ao)@_ޯ{g³ _ӕW^oa}m?hzvm;Ͻtg]CE_סAˮ>ſ5uߔ=ǻ?Sj?[2bjڵt=t,v){)w}z/['٧F} /̦;!${&H_?}W ?oux:q}?}<OM^7ܜa+߿M_G>h}lUz^_Knݟ?.Fqh?U>Sn?ϟ<ހWC8o}oftwjHM׻q?o?G= `ſs\~j6ܹ:?x?*ӫ+(W ֿuu"Xkq{{|`~qC0韊}=m@r0;s`~+n>ޥnx߹#dr= ]  ֘?z6`'ߺM[vLX}w}/1ϡF+UѯK~8{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u۬Q^){ߺ_^K)Cߺ[^׺u{{^׺oӇu{{^׺u{{^׺u{{^׺u{{^鲾W?[\^v?Z׺~?v?}{(Dy_w}tewSg?¼[W(rkAba6ge~d諛~#v;qu cn}zU;޼6Wv/?_rbTXUl_}}_ߺH:;?{O}t ߺNT_ߺC( ^S{~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~7^깾h>?cuoQN$#]?3k57/8Pftc³)_?z^w'^wYƽkq~:o|u x_>‹AVN6'<2qN qomɱ ̮˟>Fg:SWP8wCl&/mta}=mӧNӦXU'\*?ht<юD>+wyOL?>q^=u.K)O+Bn7xpPxMמX{^wOKsv^~}Q.; 7X^d0gobƿܿ@=zf‰eTU@$p8Q]:M:UU?)ǬT;/a׿}=;?(~urﮝz25ﾼi|.N(|׺;Wa ?ߺE{i_._~׺{^ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u?^_~Կ^/F[ߺI;gVzzűzzo*,bU[cmdTIO54O{/#؟ò⿋?{G=LujVT@y{i/~5`>׺VM ]H{^ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽uN_4s˯gLڿ3w`*߷翻~}ץ G{&N"Y\C?OGK?ug?q*z?>{kgu[K꺃?ߺH {&MF1n?.zsCwAzohtÿqWѧM{~ⲙu׺sð4x<-_]ub?momuA܇7{ǠqrpiGFgn/0?śGiѮ^Pdz[>ƾQ%P |>+ݹ??/T~s;*nǐ7}?!PsA~{o_n?*6:>}{c,OsNѴ~T6V }K7UѧGîvQŻ^lI?Oߺ^ujP}^tU|?dLmۿ?>ރǯ~z_?f\%<%.F}M=ZNGuc/}׺(.ߺ@|>׺$[1}yWn~þ4kg5{[r vxe1A#޺_qk=twude6^@ş}ݿ^۽ukiTa?~9VA{8v|?~~OڻqVѻ΅[F:1Z7ף^~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺ut_~yϿu޴?x-c}tw>׺_{?mt1ڝˍxl&/5Q, WUy\uDJ lҤ- E"fg].;(+s&h)<󿶷sO[#cq.-QQ+;D<;ǚ侍IY=5qAo>nn77m+ьw_gc=hH|[S=Eu{^Tچ5}yӯu=u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~7^hm~87WOu2k_63Wh:KWg7~ݱ>,}:APh(x?NAwqC55`s];?g;񿳭GK?Adrq?iǗ] }}y $}:l?guh~t)+b?c7~Guc_fog?P|wp}7.f%??]9VϿu8}?ڕ藭{o\+cWM@?M:"1†c~lP6z6WrIYۘKۮ4r?>3ǹ)mSBtO^z4s?׺>s_uWm{u=u~{ߺ@bBߺU ;%ݿ"Cqxqoc|%U?]gC/N/7Khݣ}?_~ߺJO~&t!͏}ǿub/}>׺Gڝd^c s7o.^^YvN&r9ki. '=AG ?Fmobp[Cmc# {4l] ?|l>kw>3?Gf9=ϡJ=ף^׺p׽u~{ߺ^׽u~{ߺ^׽u~{ߺEv7=Co [u|n?u]YwZH}&@ HO~9zo?zt7kzQ?7tgm~ײ`~޵Сpm?5>]z)>{8o=mץMuݣŏR{Ϡg_2u߽%迧OG7ՠ#/sPnñ+?5oEϧNנq{޺3,fSqn w{hz]Q2<_{?ӽ6˟B<}vӔ}gNr?#Wkpsۿ׷/S'Nn/ٟo'_~: ɰ?31}e߿=]X}M_Q];3iVn7{ n⎂PwGܧ_A_BYn_W+W{~{ߺ^׽tޔbJC>׺J|W.+ݣ˪W{{{%[tw:?Yy}OZ\}~~{ߺM׺Aьxon?}uZ{ack&q[Wh?E[Go]iw|7́}Ӡ7r﮽sa[1a?mH@ hao8*(<:?ЧV+~6045} =tʷytH{{ AGsk/cC&?_~)=u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~i JYt7/R=Sߺ_ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{c {^o}^׺~LRLbw]hi˿XGKιߛ~[#V/ZmtkSN켏qeٮo܎1nrtWA~Ip? {ǏV/ïn >;md8ϰ_a?=<?7C,>??ܻ:=~;y^]RJ8ܻ2}u^'Am*$^@ *OMcݖrHj5§iӯjc/7%Aa,  jՉ*qvO_ynz_6;FãA}폳Nz\{^׺u{{^׺u{{^׺u{|P{-k_[]~}9hv-:ş۷.^tc){Ơd?׳~eG9n ܅,ˡG@6s`ot]9_;8?/v?vo G?h=mGWՅF`sM;,/Nqk{ߺJ"8?_i>9_>ֺk>S/O}tя[ۻ?˭sbxm׺=62xw]?K٦$%?_WϦQ?߻ntU[ߴ }ⶾ}Ǽ}u^-Ǘ6v;k~?ܩ$!?&/qd2?,=E/|{4~FϯVxw8~ާՠ}{4ס!{^ߺ^׽u~4婖ZF6uOxP}td6!tU|?T߱Q7C~}rȇ/z;;A"oů}h:}{^`׽u~'3_ ?}u\»FhW?9}{tkՂt(_}tq)׺J喃9&CrSqSqM8z{5עo뽣YT_`WFò֝ v?AUp /ˣb^zK~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺZ}ҿ] Կ(uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^'=t\5}{+B{kjxo{{{^׺u{=tO&׺${qg,G vqWw: 9NB~W(^Rz͏xgC%BӇut]_3Oup?[?&?-{/_-^a,. ~;?GO{k_}0}iȏuf~׺t?c>:H-F_5ow~Ίo?Ukx!SϸWw7Fǣ88}ʼ~qԩ;Gtw6Wz5PӇu{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u۬Q^){ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^鶺V-n=tT~K/>׺&&;v7Fq?Ǹ_ 7~cwݻo1Qa[w>9t>CXw~}GxSFuj;#ώ38񷹧?`ڇx_=v~׷/v{onыzb0?#W_?tt{#ߛ^}rV%v{#GOܼztbr4__(usy5><_ﯹC pZ^ߺ^׽u~{ߺ^׽u~{ߺM׺Aƽu]᰿?Aoa]hV~>wcm/#-PSUQox=p$}zko̍[q6nkrzAwxدheh?rt(l}4Ѯ~·cNx稫?_n=ꭟ[OW7nנ7nt1JWq_D j޻}f/~9 ?ӯɿuoo{4v?-^ a_= 䍏>}W֘dw<?)6ܿgE[F\odo86{a%Sv}^_fGFOMUwn#.?Q-o{K;ϤW? yS;G]v܃@?}OBOdP`}t&^׺u{{^׺MP}?K=tkkߺA~ac5ñ<^m:{^PӇu;),?{^{bt?jb_0x{wn߶][wܻF3+ݕp_ c~za=W7ŎT6@ǸۮnwǗVk{>:'ߺK(G)o~ݥ{{hrY BhrNPWmz*^>+=tkьڴ6q9ߺBu=u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u-+eKߺ_1O~ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u<S^׺M7FF.?>e>ow7ܛZ?ڸOgX|RGǼq=5̦G\~ޗ-XZxp>}o~΁Ϊ,;[g'E;GСwk\mSd5-x Ő)c7U?gE[_jmѷm>εq=XGϿh}lO?O^jO}m{{^׺u{{^׺u{{^鲲Z^?ucm/n[~:ӥKŷߺBoߺBw'ߺA~OPy\{j:)c{[_W7}WpQHO?OAG|=㮿C>׺usԟ?Z4wߺN_t{c1[[{5ۋL8s {*?׷~#Gjg?{Ͽu{ouZ4[&mrW/(~8޺$X[錆Gl_a^P^E\ο:[_Ԙ VKrlqE% sIWX'uc?O.'~e9Pi2,f#J. v g|gim,n_Ftm͐˶0$A_y5|6G|s{ܻOk xueaPG*8V{  b㦍ح?G\'{'7Ev7]Pvvu_3o/7Ow7sϨc]~%_?܇]?_?^mzG$&M_sORCߺM~ߺB~PߺK~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺZ}ҿ] Կ(uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺ub|c 5{*tU|?w\|w;#'kk~G {Ý7}o/:ZVb8)}y49G(h/ܹx >P>=yL?ۻ?:khz^v׺tDlx^i?}t?[ߺJ[^׺ VN-}tX;NKm}xOp.uCAG#[]oISAc;:xtg:UnO?_uNcً_~ʷo/tYx} =l,^;on=nנ~dsy6v{y>¿: tNQ?}ycѴzt2;1G}}F6QSմme> }tiՖuQߺC>׺r׽u~{ߺ^׽u~7^믱׺ߺN׺uk uj oeuMWbūqA=_>Xi7w߿=,-oߟLŵRh쭥@# u.Oʄzq<:z/ȫ'm1*9bXKbŁ0k_?wnΌf¨{UUQ@TUZI{{ʛ'lm;U)\>ל+eTp^\(ݼ'֗G^{_XYվt~;@<8> hj14tڴ[&gЇ>`³}׽H[dӦ?ί{|v}o{6}fGG!#S]}ӎ셿qثh)gju}/# hߺN~׺u{{^׺u{{^׺uu؏l?~{ԏ~w{~!wGG =uU@7ncGӨ[ww]W^+G#OX=| 6{w_$}?/裡??7wG++?{slz˜w{O.#mxz6CVm}ŷO8x'^6o.güG=[[_OTw?rs+`wxٻ]}@;غ!h7dr^moϰgr~?vܻY};GA݇Yq/7)Sմua{AGX{^I{{^׺u{{^׺u{{^׺u{{^~|?ߺU3qӳs!O}=[ @nU~9i2}w?Ϟ6{G߿P[]Wou/Ǽ*:^v?~@޺ sn D7۽KG]m\ _Ww:=;E_Yzj;ş}hxj zh?wA2w!eOeˢ;;<^w[?6t=?pNmOcUѯNAGGG^,c->}mjŒ+~,KGX$o׺V-n}t{{^׺u{{^׺u{{^׺u{{^׺u{{^OZWˡ{ub׺ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺hŶ_ߺU=<6Ǿ!`ml]Ej]q _W)c}nzC+?ݳC+)s_iy*o{u^?F}=t }܏&^cg}^&ՠwk?H:1Whx~Z>Q#ԡsvz;x>۟wd2¹}>?݋Wetb!p\+ץn?~8^׺u{{^׺u{{^׺u{{^1B+?+5{ x[>n=:!ոtn;R3Lw??sП? }~{m=}gVK{Kiڿrv{?tL[[??ˣ뿈Sna_nܻE\w:6=}?TГw}V/ޟrOh-}};~au3~={G~>ьݥ^u][GN?u`k !v/t׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~44D/ЛfXqoQ׺KZ_ܟ { :?qvܻ>:n߾{_#op?yOaQ?}l9P?ݿNt)뺔PnW)7COص?ۿ/>ʽѯGq?29t`sGvv{}{}o(D=B+V?h(s)~O} Wѽ:Sg?gÿ=K]kKn={O[w?rԯQf~z6X?_?n˰n]sWݽmh6[!Aߎ>NtPt(Pkq>zJѾ׺~׺q׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~i JYt7/R=Sߺ_ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺C^!}Ǜ{y?Vp Ѓ#|WG /<Vу##OsRǮtNaz]~=t/a?׺k³){uI^7`tYqڵ ɋٟ"wGn/_g[_gK%o|7yuh=qǨԩ텭O{7u{{^׺u{{^׺u{{^׺mߺD縶QCOi WiV/n8ߓ5TaYܧ[{_t#^8?׺U{9w^{^{*㤮Oܘ_ nGw)p7_gzEϻnK>'p7Mwz?iŏx IG~ثa[Gf/*t?:ic(ğ{~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽to|` #{^>hxvӎrxkG{[Q_o0?M۹oOfmvpӔ6ܻz;Z7U@/6_~ R}e{*=z)}i|~-H?E;G^=nv?+[5q_Aàqъ?g~>Whz?nMAS~?,~+WХ`o?~kr^_)6UrﮂѰӢG]IyM.?`nWwCây}ɎpW:tl&Ҥr/3}=r7o/FFlgV1)qǔۿ?GoyG}du4ﮏv+oWMyٍb|6[w?G ,kѿJj/}t{{^׺u{{^׺u{{^׺u{>i_._~׺{^ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺MfCQ~UgK]?WN {?qyGַx=6;w}Z hX[s?^'~,tq7Y:/z]Gt{^Y{^ָgcz_Nq??oY%h?!/>zwπstLG=?_-yv.ojP}[x=$nA=  ʶtUq= {k.w羟7{}u*{uums<_o{::ҸRӟu{{^׺u{{^׺u{{^׺?}tC~c>h?ݿz"U8GUS}=tG_?3ҟ?ab>).ϯV翿?^~8G@>d+?便oA]wYooًm)Ϳ]-x}=;qx?y_A)v \NmG??gFA> {^s{{^׺u{{^׺u{{^׺u{{^׺u{ra{J|s}w#yLo헠eӑeDf?{ o&A]rt1~5CV n=ʝ^Ph}l5S]aG#j?Y_fߺFW˥Fwb߷~n~]0myiѯK~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~i JYt7/R=Sߺ_ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺M~gu'WY?藵?&>x?^Ox1(~߿=b~d۽Ddo?h}}mﯳ}??7G}:`~??׺U}CdO{^w}{nt_>GiǤ\E{jL{)~]x~y  v;齟-C#z엧z_oNy:ݿz0>ΐY;k)?#/Edxr_gBons}G~=M?_t{{^׺u{{^׺u{{^׺uYfߺD|`~38>O8?{K ^o]+uv>:u<_N]&_ZaW?3Bޝ#{e?c%ݸOa{na-GE+c/9g"a6gFsd?c<$K:O_B׺u׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽tT~Mm{maOSztt>;XW?:yh܅=m~<4?lgCy8c/߽G_W׫;2x?߿{^/~} X3?7ofǧgZtu}Oߺ+?߯uf\] t.uF1O->]E{z k~-3wH\;?nS?yc~z2ݹC?m܇=Gw'O(Zǯfr?{*x#a{8޿s죢;g6^5}}tp :]6]{ߺ^׽u~{ߺ^׽u~{ߺ^׽u-+eKߺ_1O~ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺n@??90?׺慰'0홷Ǽlm[ͣOxFc?\%lz-r};\GߺC7~_[X?F}-?t@'ڿ:ӧOSA*Ƚץ%?[d!:VnmA?gLA^h>a/k>ͱ={%J_;!GChS;ǏŇѴ~?=/:v`h*z=h(qA_٧FX.?_~)=u~{ߺ^׽u~{ߺ^׽u~{ߺ^mo׺,;c}?a]v/R?^=BǗ_|}޿ߟ~ݿVtC^~?%ބ ALSt܎z)achtYn_VWme28ϳ_`} _n81at],bƾ~=tO,zt?_oܥ:CnqOWş_~ha'ғߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽t`~oߺA~s>׺AtߺN8c}}tcÿ?^_e_tڛK!'Cqn>y}[iӧdk?ƸNA￧~]V 5P??}t?ۏ7ߺI׺.}({^o}B+?z*ҿ/~]=?fVb[?~xF?t~Y >/@8~ޅ[OkC:tkҚh2?>׺L<(.+}. ٿ^ߺ^׽u~{ߺ^׽u~{ߺ^׽u-+eKߺ_1O~ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺uySߺU۩O} ?}l=Gݳqַ#?d1²=~}/ϼuF}ɏ{[wW~qѡ~ܮS_>*ZKqm,28K?{[_G!?>ɺ/um,}Suŝt/?}?hz,޿WZ_o`KEgK ոv;E}hOۭv4*um; ?#ߺFʋ~9{^׺u{{^׺u{{^׺u{~-~=?gE[\*?[c{zw~#9q{$K{Щ]_g|?^z]1[웤=:v>{0_fcn߈u`~n[?yf3NcF\p_è;#xz?_ܩOCnVLX?}t_s>_[_ߺ\qF^ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^f.~׺m~5KߺNa&^׺o?M[{^^ݸG|G{*V_h   }3aCg*: ny~ClW?SAmsoӡVѻ֠y[_6ث^_c uW>»~+ycKt*QA??~׺?o~ /{^q{1 :?{~{ߺ^׽u~{ߺ^׽u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺uk ~#/ER6s}t~=Cr.ʊ >:?^I~-^;x}?9U<\S7#x9ӽ6{_)ևBqq?o{5xta%O엤6c"?>[GK/O[y{K6*?u?O^Z5۫+ڸt&^׺u{{^׺u{{^׺u{{^鶾PR?P,8}o~/uñ[?`o[9;Ǿ? ̧^?D)x}~׺j-@3ف緷v~Z=*7[|?}w tc_voނ㤶c?#S)#WCnVlxy!ՋsE5?`^vƌ~~no!v݀߀`f:粒Bm+,??O~9^׺u{{^׺u{{^׺u{{^׺u{{^׺u{~5^+ln\RSUA;C;rrwny=~_>Ƚoa^nݺ v@D3f+_?>w7/G@G1G!mG[GBR׺!ݩyM_Gz$;'㿅l<>sk~Q?w)uMԛ$nۿ=|f=B۶<:4?k#yMs?r}Gr#ЫwC"WQ?\ro.uwxxAonm+#{~?x h?uat2n;oػW_K+?1/{H:^+K;짦â6#?zW-Ϣ>~ɊXg }d]'VPO>ͺ6PQ ]Ͽuu~{ߺ^׽u~{ߺ^׽u~{ߺ^׽t3_w{3ÿn9kw<}ʙ܏   gC=*+_ߺNx:tۺ˿߻AϷwZ9?8!fE"p鮄dk%ސ{~ 3vݺ%~yaih*{u_t}rUͻݴ$#-Wݹn?ܮ+kA!{uu_vs)Ǟ?}??w@nx?ܮS1oys);j҇VmZ؂$wvrLe{F^%G:_iu]UP_ǿuM>׺r׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^t?}uU_#p?#"^nnP}Oq_ƽzoM1Az?-Uk#Iq#/5߳AÏ&oWh:*C_S_9qTnhףgӸ}f2j6jw/_M'=ۿ-y}~ݟw#߽w[uCժu]}O{>cc׺=u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽t plVT)$'&GE[^}Tv?3g=/#~}7t{= }x'^u[7dzNJWP#n܏"r7~zm_GjYuߛc~uz%N߿[}i6NC廓|=t׽u~{ߺMbAߺ]Ѡӗu{9l~; v7?N{)EY$ '{6ׯ{^׺u{{^OZWˡ{ub׺ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^3;Oo~Ze1xWn~q-;osN}ܻ>u~|Sic{g瞡]|z?v_?>杣whgCٹ1|?zhkߥL_~_w?t `?lz_ھgS|Ř}nGH>xGs>ʷ}g^_ofm ۭՌ|sb*:N#|uO~8{^׺u{{^׺u{{^׺u{{^9ga{ o)>K=9hA^n:"i} +ݼWtRqe?_ЩCAGB^v>wG{^f/#^K{+8~] l{2Fg[{߷[@޹Q?}o s?:s1yG{^o8?=9H]w?g=]W?ߋ o>nU >,c1v*+h˰?~y*t?6 ?ߺJj _K}H7ӗu{{^׺u{{^׺u{{^׺u{{^׺u{ǬZAߺ@GbNX{ckUxCvODC{y}Gwc@wN=}-?Ou1VZߏ{VYܙLv?-xae[z*Cv-GkطX'@Wzmn§o{sۏ+CP}L44ySPҊژ[dTfOqO= J0U4$*Hiѯ(o7;(*[5חsxQ{i7/{.o[-vۥpF7qC#BC,k*Fx@ő4}u7Z~v~=l>4G ~bO]~;'ߟaYd-{~<9G}du)ﮭo@Uыu.?t{{^黊Ay[ߺN>׺u{{^+Mq'QЪײ^ -py?)ԣ5Wӧ?ۯt{{^׺u{>i_._~׺{^ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^鶷~;):TA?]-6\Ds˾@zԯO!K=;PznE}'{_]9}wN_b?_zݸay}u E*vc\?/ɋ˯>׺!ۘv~>^}w}o4$tݷo]5_YſɿTs~3IrV8?t+=׺}u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~6Wъ]kߟ~Ӡʷ}U?QAG7C-w_xe=G 'bC-u6ﾾ @P?7HzLnfSA~>)~CnxGG?ϼhi}Mt~Fkq?Uv㿃g/m{ws0?aGƸ?aѴ]=[GOo)ף߃ cO_ߺJZ:$ D"CϿu=u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽tV⊌ې8ߺE'#pl-s'Wv݂Wv݂u]_)C ?6{{|Arz1O?-ҧdg¯hg: 'wӯlw|es+s|}$醠|G+pV #-T mr$3.Wn]$E ;AEOM pf[އ߿n}j߮fVTaV-m_zvѲѨm}W6I(+Av!-im_oig/Zm(o)/vt]Aq>οч];iad=wtz@6uSWWgEc,}fS#f-ocQ/CQ3ǣ}i}?ۏsORVӻK?P?_׺R^׺u{{^׺u{{^׺u{{^׺o7n^:-:vxoBP~KA1Gt-&es{t3SoK]AmG!?׺.&h2?iCo˞_>m꠻n]?Y-ot2u^︵G#N+'o~jD,ӗu{{^׺u{{^׺u{{^׺u{{^׺u{{WPP`;F^E%OUAc o5>t~?^ɺCӾ )V=ŵWA1]_seo3 t)tWՒK/?6<^0&]٦?f}?_?o;t-ܞW,$4pR@#\1;뵲-ϙvy_.; 䦪Zjcgh`$&Rxe&rWx@FXZ*뮟q>6IIޛ$n#3pC%.n.mn^Dx'Xmt|vs_Ng276`a9:_htG=W.:/u^{7/^Lcs?>] 1T_^ߺM^wȀrds_Eci"WˡJ+ӣN׺u{{^׺u{{^׺no^{G{uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺7{+~Ίo?ZdGj?K^czZ'{:z^s+lF1<_?kߺJmA'Vo{ݸw L^o7U^G=%S6ܿoGs_fu`sԸߺGoj/{^a׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺHmAz;׺Ϙh6yLy6{$ w$˯@>}A}ob_G:ӎ8UuO8K'U]Ǐw{7u wGcdkK}?{ʏnG'S(^?G^SV(?O~Á/<{*ݶ@ tU?:d'W{umы띥?_ǹS<_^{^׺u{{^׺u{{^׺u{{^׺u{{^׺uבk?ԃvtWSG}U >SuxopQ_EP[!=z'颺︿߲nX#|\u~{A-skxkM]{#l;vU5hl NCr}q9Z #iE ugMvnٽvd{rvm<fe"PpS6}=WryϷd<` 1^<=x%ۏmy"ӺG{q,#R]( 12ߍ?_Lxl}SΉqlj6z^Niѳl<OO<[9wh}uͳsȈ|:P9H]w?2ò{7G{OǾw7bAnL_/mWI>mCoy'v/z)PmJ|Qe28}i>цt냠mGpdmsx~}oH6 ;Y[1Ǟ/i?~ht8tݥa%:z_n}ߺGj/{^OB[~9{^׺u{{^׺u{{^׺u{{^׺u{kOu =q讠;?tKO[k~s%y F YDUd ޥ<Ϲiݎ~GG|_.zok6b~O\ ;K̡6*JTH44>f|6qnutmݿOGp /cM,w`j@H$kf2ɫW$ g,g ݓwÒvKuyxݍa+G .bh@]),C>xa㾇 DH_KGvJքO$ڎFAQ*^&e ѹRTQBE:^cG8~ކWվt~5XՠFȽtٜ~մ-+{^cl?~׺4V}}"ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽t .Wpn?9F^}{X} oG-W.?>z/;`؟wNQYd4́w߶lsȏێvf~^s蛖cߔ#}\#8TժŗVú{yq.O{-)xr; p쿕wQ2#־Xz3>ﳿzw6T>[%܂ĺ8*BigbfSݫ6^vbbpnLKHX FbXÇU@"|ͺѵF6&BRxЁ} cx/\+ r‡uԡX e+U!y HV9i};<[dݫS,I5L:= gGR7K<(i#Ђ :/L/폴z/i/qh̰rĬ 1RӲH~'K[p|u o7Vcl 3&H+xҥl.}`Уb|NO|ˮ}ٷ\}FiLP,q%lj-)bIF5šr+~@w Ǽ;n`{?7\xmo%f' _+34Oq?}ƾ뻷ݿ~筋3a%l=֛ê7}.ۻw}ە|6 (s5Su S4}KmpیRX?5hiP[^x3ٞqoy~Kv-k۫yti#O]`3[ dH-.j#>o}q[ߟz3~b=OYճp5VߺCu{{^׺u{{^׺u{{^׺u۬Q^){ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^鶷~_7?\}HGJ?#_G[X3꾥m,>/yW{6}/|6X&[ܟԉҳߺBf!o#~}An߿r.y_~wDߵ?P8הv[/)mz߿X'G/{j:?׺t{{^׺u{{^׺u{{^׺u{{^׺u{n5}M3?7Wv=zCYȽ;zKA(}|7~n&GW,$q [K<`6GT6 ꦙXrSGILjHȭ$aCY5i" iћ'Wϳ_"uW76#fQdV*f>6 L{~xg%s#{Kr s6*Q6 bT $BG@cDxۮQaQ('V1i ϭ~?p?a/^Q ]Ͽu]B+E׺B/~o{: UZ{2Q Լͽt{{^׺u{{^׺u{{^׺u{{^׺u{{^׺NfX^괻\}?oǸzo~sſä(q[mk fGGF ee G ( o :r?s<<켳]VV2AR  ;c?ph2Ϳ8\vkf)+˸pe]ĕXLo {-,eϩV!MiU(O^C˻gݎapj{}t md`l,QcAw}l2E=$#`l&\~{vZh(28܅$AUIUO"K ;# WR A*G Ȏ'ʼGr,'K-խLG"3E=dt`Hdu#}U>ոvw>+kYZl],ԴRVCVAOQY-#(TK a)K5*B&`!{ߋ?ߞ uE>_햲HK-ͬ$RɡXBMC++fl)C-EL4p̖Fzj*U8GTfMʩ+Rqgf/onv^]DI[ۤIm1U$} ӟz,O'mg~nATCVM[8+cǫPIUK6k.^^[iPڳVϬX=So [=n.wn$hHdJ}́Vo Mz* IY62gkUPE5K$׳$OkyFh$Xf.oϓݕwtd'Rf/X6m=ׅgn׷+])S+Q=bL)9 9zIBgQ:`SJj<ӓ?ݻ 7nS-go+s.岚c_7vwnKWCw~.Sz][0 ?cmnOqb ]ӳx \ .Z90IK%AO;E)o)r{onm*KvFT4üTbYrܵe׽vn_C6x=>bNݺ5Z̭l3%[\[F׷3xŐWx:K{-_O{v Ѵ|'7WIӵۣnu{{^׺u{{^׺u{{^׺u۬Q^){ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^鶷~'?E>{ zw/Z[WbOoή},MS\ݍ{v } #=_#ؗny;]*?xGK{Sv?~?o >c/RѴ~VK-Db]Y^Ǡ#ߺBou{{^׺u{{^׺u{{^׺u{{^׺u{=t];R^?+~Ίo?T {/q'gUay(;>xXw6_Rd7SO\LuY!>zV:p+UA~]/-m]:ʳH N2MmK 92_g^n<6w]hƫ-m䷰ 滂$-in+,He;`c7F>Mv6Z nOt{p+) 웤=k{\${Tݷ-b/.&HtfX*۪ch(%I"i|RK ]¯oMJ"~ Aӫʷkshܶ~};l\r۷ ˴_UVi}DK+xF!{xߔ }757~=NݎL^gsvFءkC!5Dژ95yV9$]>Um-%pFN4@ݠC_exxv>B{[Vm蛜YHwK&rx%7 8ZX/z>Lt^Nj3{{|møRP^ƠGjr=,PaLUI ZT(e!,++a㱍Ug+1!cI*j{T'9Z Nmmyno5wfm+X H^E}7pIfY[m=MQmfKo(j$|>73mPlwZNeJi/dgPm2C@[MApOٽӕpm޶ݴl4j.--qxdu͒J%]en[p_Jmr.g~n_i$Øb6G͍#+{cAmkE2jRud6iW%}>{=ȗ;'leB3Z_-xrIg$5f!G5u CsfS'mcj05{ng*$aAQEDb=H9{5jjPTcB#R }{+eow6m7,vWW1n0_و {yR)-7cQk6YJ5F2DυsT=TeZh%mk,%ñw#B@5j-t~}>f{w+K -kC-.c+$漞W64V%5?sc=w<&bQy,vbV՚%UCFzjc ڢ奧9]pۭyZPBرBIEC U{4&kT~X,YmM Xw {?8 k<&8/.NǾl{)hdX'>Cp<魤Gj(9DJ400d>eK(yc R8U &h+A?ǿG7<\sjp-lmve8渎n%7-VK\Hm?>.=CJ<κ^Shzv7WsӿgއNz6׺u{{^׺u{{^׺u{{^׺no^{G{uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^-(fQߺU=NGw]﷾Oq_Y7֫;1x~KWx1GV6ot{¿[\lyr7]H(wn;a^Mq{?=ٮv y)Ew>r;WTm+[ >U:i:m4?mxx^k^Zy|1}co}%O&-м?x>q//xl=<%0~t?Y=~_9`WBF]7m#ܩ׽:6Wkz:~_aGo~Q[}t׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~ރ)8{d]-؛3W =s:ۛ|1F*zIDӸH'C~lRMUqPH*xhAݯ[?s{6w'o5a=7 y`n4I%Kx'XqFhMŝs|t_{8 ?ڰMϒfrUt,ڌe[SSEON$6R{P(G$k}DAI:Jg۹o)cN]Եݮ/hnl+Vv9..+xx-v}޽ۃ\bMR6G#tY ^VǼoƇ?.x/%s\k{wE*yaJ$эlu;^;0`>Q=cg(N?_m;ǿu6"?AoϿu׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^ߺE+1oaNm*~_ꫫfS)Y_n翺_?mGHJٸ՟?NOSlO޽9;r'Ua!ѯ6?//y|Amh ;imVx:B,r#5H>$S·VxOz/y:zK'꼗*gFG?;R۹?d2?~~œ_NAPŬ_yQu]Q#}tg=u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u-+eKߺ_1O~ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^3+♿&m#uwvX]+c?>OxaswɰC(7pb<⿃>۟/~}@\%zl?w748? /؛Uպ |xPb[=n-oH)}?'mޝ_xQC̺=~Rx~7|/ttlwV#>yy]}s՟ﾾ正h(U6Vgx>:4 1{^a׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺH}AO~Tɮ{?#o~?.۔}q= GoϽ]on/Nt=I#}6n= vQvZc:祯YozWV }K{Ay[ߺN>׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺)۵kh!X\ M~Ί7M]C){Sin* عcS\*}o)=z6l{n-YG"Yme= lьڽ 9iѧF3m}ߺN^%_/qX<}+>}A{1_Ó/E{OҮ+W 7})3;C)[:vSPok^׺{~{ߺ^׽u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^0,arC"xlU#^}k«8⿻B@^Fyf-}yCKQtcv?}?aygد~Ss}hF;?7v`K=zNO^Ջ ׺1Wi}~ T4"Xks{/~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺA-y8mߏǿu%}k{^Pڽ-ny׺1W>ﾟu -}"{^9ߺEϱO~op9h+Ӥ}=z0Yttop?/71iGݯc#{*ܿoE[ǗK_#?^=ϼMah~ή?aGz6ZQGu>׺u{{^6El<vQVs /<8~l=hC={ii7K*6>z5ߺN׺u{{^׺no^{G{uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^|nKo\tk [-)B=9Hfk|ߟ[36omŏq7z/qw~av?ߺ>gWbo?/no-7V`w&/{:Agr8fFѿtcm];O?>@뭥ﾇߺFjE_~.=u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽t{q׺Bm,uOuCG){=?B׺SЊ!`EϿuu~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺMԬQ}tfGA>׺Kq?ߺJ ׺]`noß~:^׺K0?{{O>¼۴~+m79~pǠC^{?tdqtȽHZ7DC|W>ˬ#?~rȇFq$Ϋu *1 <_~9{^׺u{kOun`?Ϳu9&ݻks~TnNk2zxM]3U_kx~^~}u=}v=[ڇbHeIH ]oCHSKCs~m7;)3nee[0YpJ_s)sn;2?!]:Kݮk9wtnB} ;.?dz.'v.h `s՘>C_/ՖtZ}Sٯ^6(#׺=t{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺oӇu{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^Gwu#?;ߺ]^ߺ^׽tTB_ߺ@_ߺD??G+WLy V~ν~_AW+ˣ^NQo׺M#k8~ ׺p׽u~{ߺH}_^׺iQ/iI{ q\Nř6"Wm 7^&0}>uY;t>쉳{}X'Uu1[5ӣNcc/}{CB(>׺r׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~&h?~?Guմ~WGqWv>7~z~n˿qU_ݶ?ٯ)n߾6wUub]؂?ߺJO~{ߺ^׽u~j;wLΈ;9+x 4ny e`(Z2!B> (sg;lQQA+a>kt~JfzO HfhfI]^RL…X݇Wow.|e*8&sMΒv316:cJXEXid"Or7s*K̛E47 Ӆ! &"eW٨\,}ݽҕr**?]x:4{m̾KU'}v!&Kex;fbC#ī+&;cۭ>8FήＩ3t={IoR*VO I5~*h妚xeՐ ms9kld :ªA*THZSsM~?8KR5rKk%rG"+vv>imZ`[ߺBu=u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{m߹u SKPX_'=)+}RFct:xgu^_0rM{,WM]sAHu~s;G]~?Ǐ7Bcjc|9׿u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^08\qߺA?С?}}t2{^ߺ^׽tHH=up}UڻU^U{{w4`z#l2dznjDF H{~K\fbsR2kCZE:?|sOϧ]?.iP)Y$U:H35m*|9ojos[GoaO?mߋT8#xovT]AW *C]M4eqql 8U|@**{ +D-䝣vsz9wvܤh"kro#BY[[_1b|?M؝L8vMǺpL< iɏ'| h*dD lufG;ŏ ݢ"ImdRIHA+eۏ?Go6y{{,W3**[Y5VGIlڻK(Osw\uUU7>׺s׽u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{hbD^Tv:Gyd1aw8uvkAm]_ín?+nΡmw5 }f+#|ܫvь $N}tqh??^K{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺MP}?K=t~)06ߺK~{ߺ^׽tN>Yn̎=ːt}}9x˱z"7֟wO[xj^̙DDfb؝Dj pq?on_EjƼOJcΔ]u{{{ߵﷻ,\*jiV m P P#[zkgg]nmmp6wFg͸}Ӵ\_i_._~׺{^ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{qIH8Ͽu/I/6$/B댦VSOrQV$Vx܈7X?46ky}peFurUAF/~zF&?uu~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^w؏l?~8^׺u{{^ yLw {)v w=]֘ Ѵ Th(:4l}^-{ߺN׺u{{^׺u۬Q^){ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{Ǵ?e[:*ݾuD_13NS?.x=tP7MGdr}6/?˥EueȽri`A?c}=J[Ơp~׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{j:CϿuy{ߺ^?~ T4"Xks{/~{ߺ^׽u~{ߺ^֟_uC/?~|=uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{/bǡuOa܇3?vm`P?>%ڸz屨?f??_m?oY)?^fetUݩd ac{^CGp5Tt2H.lecvZV7dKft{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^ԏ~uCB(>׺r׽u~{ߺ^׽u~{ߺZ}ҿ] Կ(uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{&Ga{^n8erL svwDG=YGpcovӘmp7[Sѻj:5Wm,v{;??h{Z9T _8$hOE_b 7fߺN׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{>i_._~׺{^ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{=tI{۶\hE[s1ث=[v^nB1Oe\?.GwVyo?޿ԥ/cٿF:VPV>׺ s}{'u{{^׺uk.Ï/~8{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^OZWˡ{ub׺ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^X>}tHSq?!~?h+^~>qÿDzvh q>= 98/{^Q{{^ߺ^׽u~{ߺM׺p׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u-+eKߺ_1O~ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^鶺V-n=tt l?t~4=t2a?~)=u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~i JYt7/R=Sߺ_ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺n{C??~wEBQc{O~8{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺no^{G{uߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{>i_._~׺{^ߺ_^K)Cߺ[^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{{^׺u{>i_._~׺{^ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~{ߺ^׽u~$$If!vh5 5#v #v:V l t0  5 5/  /  /  /  / 4$$If!vh5 5#v #v:V l t0  5 5/  /  / /  4$$If!vh5 5#v #v:V l t0  5 5/  /  / /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5$#v$:V l4 t0  5$/  4f4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  4$$If!vh5 5#v #v:V l t0  5 5/  /  /  /  4Dd &0  # A2>^X y`!>^X: ` _5xlEgvwr7m=Mw#ECkH%('v )i"41 ((@)؆`C  !"#$%&'()*+,-./0123456789;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~Root Entry  F  )Data :aWordDocument `rObjectPool )  )_1098599304 F )> )Ole CompObjbObjInfo  FMicrosoft Excel ChartBiff8Excel.Sheet.89qOh+'0T(0 @Ljstones@1J{L՜.+,D՜.+,Workbook "@%!SummaryInformation( DocumentSummaryInformation801TableF#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~                           ! " # $ % & ' ( ) * + , - . / 0 1 2 3 4 5 6 7 8 9 : ; < = > ? @ A B C D E F G H I J K L M N O P Q R S T U V W X Y Z [ \ ] ^ _ ` a b c d e f g h i j k l m n o p q r s t u v w x y z { | } ~                            ! " # $ % & ' ( ) * + , - . / 0 1 2 3 4 5 6 7 8 9 : ; < = > ? @ A B C D E F G H I J K L M N O P Q R S T U V W X Y Z [ \ ] ^ _ ` a b c d e f g h i j k l m n o p q r s t u v w x y z { | } ~                            ! " # $ % & ' ( ) * + , - . / 0 1 2 3 4 5 6 7 8 9 : ; < = > ? @ A B C D E F G H I J K L M N O P Q R S T U V W X Y Z [ \ ] ^ _ ` a b c d e f g h i j k l m n o p q r s t u v w x y z { | } ~                            ! " # $ % & ' ( ) * + , - . / 0 1 2 3 4 5 6 7 8 9 : ; < = > ? @ A B C D E F G H I J K L M N O P Q R S T U V W X Y Z [ \ ] ^ _ ` a b c d e f g h i j k l m n o p q r s t u v w x y z { | } ~                            ! " # $ % & ' ( ) * + , - . / 0 1 2 3 4 5 6 7 8 9 : ; < = > ? @ A B C D E F G H I J K L M N O P Q R S T U V W X Y Z [ \ ] ^ _ ` a b c d e f g h i j k l m n o p q r s t u v w x y z { | } ~        !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~ B5a=JJJH-(J=x<0'(81* MS Sans Serif1Arial1Arial1Arial1Arial1Arial1Arial1QTahoma1QTahoma1 Arial12Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Tahoma1Arial1Arial1Arial1* MS Sans Serif1* MS Sans Serif1* MS Sans Serif1*  MS Sans Serif1Arial1Arial1Arial1Arial1*  MS Sans Serif1*5 MS Sans Serif1* MS Sans Serif1*0 MS Sans Serif1* MS Sans Serif1Arial1Arial1Arial1Arial18Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial1Arial""#,##0;\-""#,##0""#,##0;[Red]\-""#,##0""#,##0.00;\-""#,##0.00#""#,##0.00;[Red]\-""#,##0.005*0_-""* #,##0_-;\-""* #,##0_-;_-""* "-"_-;_-@_-,)'_-* #,##0_-;\-* #,##0_-;_-* "-"_-;_-@_-=,8_-""* #,##0.00_-;\-""* #,##0.00_-;_-""* "-"??_-;_-@_-4+/_-* #,##0.00_-;\-* #,##0.00_-;_-* "-"??_-;_-@_-"$"#,##0_);\("$"#,##0\)!"$"#,##0_);[Red]\("$"#,##0\)""$"#,##0.00_);\("$"#,##0.00\)'""$"#,##0.00_);[Red]\("$"#,##0.00\)72_("$"* #,##0_);_("$"* \(#,##0\);_("$"* "-"_);_(@_).)_(* #,##0_);_(* \(#,##0\);_(* "-"_);_(@_)?:_("$"* #,##0.00_);_("$"* \(#,##0.00\);_("$"* "-"??_);_(@_)61_(* #,##0.00_);_(* \(#,##0.00\);_(* "-"??_);_(@_)mmmm\ d\,\ yyyy0.0 ""#,##0 0.0%                  )  +    *  ,        "x +x   )x   +x   )x       )x    )x   )|   )|     )|   1      ! +|    +x   +x   )x   )x   "x +x   )x   )|   )|   # %  &  '  (       )  +x  )x      +x )x .+x   !x ! .+x .)x   )x +x )| )x +|    @   +&Comma [0]_Parry Patients 4.xls Chart 1Comma [0]_Survey_2_query'"Comma_Parry Patients 4.xls Chart 1Comma_Survey_2_query.)Currency [0]_Parry Patients 4.xls Chart 1 Currency [0]_Survey_2_query*%Currency_Parry Patients 4.xls Chart 1Currency_Survey_2_query (#Normal_Parry Patients 4.xls Chart 1 Normal_Sheet1 Normal_Survey_2_query!8 ``i̜̙3f3333f3ffff333ff333f33f33BBB\5 Chart1_< Coup de sabre overlap Line and Cheekv Survey 2BSheet16Survey 1 - Final$Parry_Patients with new dataCSurvey_2_final,B!CunzippedparrypatSurvey 2.xlsSurvey_2Survey_2_queryY ZhIID for survey 2 Ethnic originNotes about nagging OccupationKnows blood group Blood GroupRhesusLupus SclerodermaRARaynaudsMSIBDThyroid Ank SpondEye inflammationAsthmaCFS DepressionVitiligo Cold Handsinfo about cold handsProblems with JawLock JawInfo about JawOther Medical ProblemsEver stopped or slowed downHow old when stoppedAnything make it slow down?More about stopping factorsEver speeded upHow old when speededPregnant when speedingAnything make it speed upMore about speeding factorsOther speed slow things Number opsFat Fat outcomeSiliconeSilicone outcomeFlap Flap outcomeBone Bone outcome TrigeminalTrigemina outcomeOther Other details Other outcome Other surgeryHAD1HAD2HAD3HAD4HAD5HAD6HAD7HAD8HAD9HAD10HAD11HAD12HAD13HAD14Line? Corner of EyeMiddle of Eyebrow Near middle Jaw / Cheek Chin indentSeverity HAD completePut on email nag listZ6@scottishZ(self-employed part timee0Z\e0e0e0e0e0e0e0e0e0e0e0e0e0e0Not as bad now but had terrible problems with feet and hands from a teenager. Colour in hands didnt change but were often very cold then very hot at other times. Feet would change colour also legs seem to have terrible circulation at times, particularly we0e0|PROBLEMS WITH CLICKING ETC HAD PROBLEMS RECTIFIED A FEW TIMES WITH I THINK IT WAS AN OSTEOPATH AND CRANIAL SACRAL THERAPIST.Had quite a few episodes during ME where whole body would go numb a heavy weight like a sort of paralysis. Had an inclident when I was on antibiotics seem to go into a sort of hallucination, my sister and mother found me on floor with my chin and arm slige0,It seem to stop when I was a child about 10.e0Z"#e0'Unsure but no obvious dramatic changes.e0e0JThe problems regarding eye etc did appear after chroonic fatigue syndrome.When I am ill people say visually it is more noticeable although visually people generally dont notice as I have very slight atrophy .Z %%e0Z ''e0Z ))e0Z ++e0Z --e0ZA1/e0Problems with front teethSomewhat SuccessfulZI3?@????@ Very MildZ7@AmericanZ! wife/mothere0AZe0e0e0e0e0e0e0e0e0e0e0e0e0e0I do not have Lupus, but my mother does have a form of it. (she doesn't have the butterfly rash) I do not have rhuematoid arthritis ( although my mother's side of the family has a very strong history); I do have osteoarthritis in my hips ( I was born withe0e0Had TMJ; has orthoganathic (?) surgery to pull out the upper jaw ( alot ) & lower jaw. I have 'the smallest adult mouth" that most dentist & anesthiologists have ever seen. I have a very small opening when I open my mouth the most that I can.I have a history of mastoid disease on left side (PRS side) & profound hearing loss on that side as well. Have migraines--seem to be centered in left temple mostly. I was born at 7 months gestation, weighing 2.5 pounds. Having vision problems in my left ee0Z"e0Awhen I had the jaw surgery in my 20s, that seem to exacerbate it.e0 see abovee0e0surgeryZ-'%e0Somewhat Successfule0Z ))e0Z--+bSomewhat SuccessfulbZ0/e0bone grafted from my scalp to left eye orbit. When they attempted to implant a non-bone cheek bone, my body rejected it & they had to remove it. I was also left with a dark dimple underneath the eye.ZI3??????????@???????Mild??Z 8@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0ZF3ZIHe0e0Z:9@)White (English, Irish, Scottish heritage)Zstudente0AZe0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Ze015?e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0ZI3?@???MildZ:@ AustralianZ Sales RepbANegativebbbbbbbbbbbbbbEspecially during the winter months (some mornings get to -4 degrees) my hands will be like blocks of ice and the rest of my body beautifully warm. My right hand can be colder than the left at times. For instance, today is a very mild to warm day and my rbbZ.I ticked "yes" for Ankylosing Spondylitis. I think I mentioned to you before about my back problems and operation. I had spondylolisthesis which resulted in a fusion and instrumentation at the L5-S1 and a laminectomy. So I do not know whether they are onee0In my early teense0Z e0Z! e0e0ZG'$Six (only 2 to do with Rombergse0 Successfule0Z ))e0Z ++e0Z --e0ZI/e0Fat was taken from my stomach and implanted in my right cheek area (just like stuffing a chook!!) Extra fat was implanted because over a period of about 12 months it subsided. The operation was an experiment (29 years ago)because the doctor did not know h SuccessfulI came beack to this spot after seeing the pictures. I have shrinkage of my right thigh with thinning of the fatty tissue. This was originally diagnosed as scleroderma after a biopsy was done. So my question is "Is there a connection with scleroderma and ??ModerateZ;@EuropeanZ%Human Resource/Training & Developmente0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0I have suffered from Asthma since I was 5 after having whooping cough and pneumonia (I hope that spelling is right). It isn't severe though.e0e0QI do have times when I get some joint pain on my affected side but not too often.Gallbladder problems (Gallbladder removed 5 years ago) Back trouble (L5 disc disease) I also have odd teeth - on the related side, I have a molar which has one prong instead of four although one dentist says he thinks it is actually my wisdom tooth as I de0About 19e0It's hard to tell but I did try a homeopathy treatment and large doses of vitamin B (injections once a week for 6 weeks, I'm not sure on the amount but could find out if you're interested)e0Z! e0e0ZS'$+Just one althought I am considering anothere0 Successfule0Z ))e0Z ++e0Z --e0Z //e0ZI3MildZ<@ australianZ e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Djaw has gone out of shape. teeth don't close properly on right side.right eye has sunken back a bit and dose'nt close properly somtimes ,when he is asleep. having trouble with his mouth. dribbleing uncontrolable. xome trouble drinking from cup.e0Zd!e0%after treatment, already talked aboute0four and a halfe0e0Z&##we sent info with first surveyZ %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0ZI3@@?@@????????Mild??Z"=@American-- GermanZ)retired-was bank officere0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0ZbbZ e0Z e0Z e0Z! e0e0Z+'$3e0 Unsuccessfule0Z&+)e0 Unsuccessfule0Z --e0ZD1/e0Silicone implant on foreheadSomewhat SuccessfulZI3??@?@@@??@????????Severe??Z >@ caucasianZ militarye0AB-e0e0e0e0e0e0e0e0e0e0e0e0e0e0&My hands tend to get cold very easily.e0e0Z My blood type is AB-, but I could not select this above. I do have a problem with my left eye becoming dry because my eyelids do not completely close.e022e0Z  e0Z! e0e0Z%# sMy rombergs seems more pronounced in direct correlation with the amount of sleep I get. Less sleep, more pronounced3e0Z '' e0Z-+) bSomewhat SuccessfulbZ -- e0Z // e0ZI3 @?@???ModerateZ! ?@Canadian , WhiteZ Studente0BNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0e0Z Healthy No other problemse011e0ANot sure If the medications are the reason or not. Methaltrexate.e0Z! e0e0Z %% e0Z '' e0Z )) e0Z ++ e0Z -- e0Z // e0ZI3 ???MildZ6 @@%Caucasian- (German, Swedish, English)Z Speech Language PathologistbAPositivebbbbbbbbbbbbbbZ e0e0Z % a gestational autoimmune disease- antiphospholipid antibodies during pregnancy The antibodies effect the blood's clotting factor causing it to clot more quickly which results in the babies low birth weight and possible miscarriages and blood clots in the e0 16 and 30e0decrease in stress, and active exercise, It began at 15 when I hit puberty. After my body adjusted to the new hormones the disease seemed to stop a year later. During the first year of the disease I lost tissue under my eye with hyperpigmentation, but no e0age 25 and also age 29e0e0zpreganancy-possibly related to hormones again and stress, lack of exercise and poor diet all seems to cause it to speed upI feel that regular exercise and stress reducing exercise like yoga have a significant impact on improving circulation and increasing immunity and causing the disease to slow down. Also.... I feel that improving my diet by limiting animal meats and produc one scheduled for september 2001e0Z '' e0Z )) e0Z ++ e0Z -- e0Z0/ e0I am scheduled to have alloderm insertion. Alloderm is an inert sterilized skin in which the cells have been removed to avoid a reaction. Alloderm is now being used instead of silicone. My surgeon feels that fat injections which he used in the past were nZRI2 |I will send you an email about the success of my surgury in November as it takes about 2 months for the swelling to go down.????MildZ @@ CaucasianZ& Insurance Salespersone0Z Negativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0e0Z- e0Approx 22 years olde0Z  e0Z! e0e0Z4'$ Onee0Somewhat Successfule0Z$+) b SuccessfulbZ -- e0ZKI/ e0I have had a muscle flap implant in my cheek. The muscle was harvested from my right leg. It is also the right side of my cheek in which has atrophied. I also had a small dent in my forehead. She used a artificial implant for this area. The operation took SuccessfulWNOTE: My 2nd Cousin has been diagnosed with Scleroderma and my mother has Fibermyalgia.?@@??@???????Moderate??Z A@Z  e0Z e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0e0Z  e0Z  e0Z  e0Z! e0e0Z %% e0Z '' e0Z )) e0Z ++ e0Z -- e0Z // e0ZF3 ZIH bbZA@White/AmericanZ%Vocational Counselor/Graduate Studente0BPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z;"e0e0lMy jaw sometimes remains open and is exceedingly painful and I need to physically shut my mouth with my handHeadaches, severe body aches and exhaustion - which usually occurs with the headaches in the fall. Okay this is a wierd one. After my last surgery which was 15 months ago I broke out into a severe outbreak in my genitials. They thought it was Herpes but Ie0off and on and then progressese0Hard to tell - I just went to the doctor and he said that my cartlidge in my nose is being reabsorbed. It appears to progress in the fall and stop in the late wintere0#22 after I had my son it went crazye0e0My disease had stopped at the coup de sabre and when I became pregnant or after I delivered I lost the whole side of my face relatively quicklyZ%$10e0Z ''e0Z$+)e0 Successfule0Z --e0Z0/e0Tissue expander - unsuccessful- infection - many revisions as the disease continues to progress. Much to do with my nose. Also a lip flap.ZI3???@SevereZ!B@Italian/AmericanZTeachere0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0AMy hands are usually cold and sometimes have a tingling sensatione0e0Z#e0 late 30'se0Z e0Z## e0e0StressTruthfully, I have no idea what provokes the continuing atrophy. My CT scan revealed that even my sinuses have atrophied. And I feel the atrophy is continuing. In part, that my be a factor in why a reconstructive surgeon will not perform corrective surgerZ %%e0Z ''e0Z ))e0Z ++e0Z --bZ //e0ZI3@???@???@??SevereZB@ AustralianZN8Student at present/Graduate Diploma of Primary Educatione0AZe0e0e0e0e0e0e0e0e0e0e0e0e0e0I suffered from post operative depression on several occasions and clinical depression at other times. In regard to Asthma; this was instigated when I suffered with severe Pneumonia in 1992.e0e0nThis occurs randomly and without warning although it is worse when it is cold. It is not a frequent occurance.1986 Herpes Simplex (orally)requiring hospitalisation 1990 Ingrown toenail operation (infection) requiring hospitalisation 1992 Wisdom teeth removal requiring overnight hospitalisation 1997 Glandular fever with associated hepatitis requiring hospitalisatie0313 and then started again at 15 stopped again at 17e0Z"e015e0e0oI do believe that weight gain or loss (gain in my case) makes a big difference to the appearance of the atrophyZV'$%6 (or perhaps 7 I will have to check)e0Somewhat Successfule0Z ))e0Z$-+e0 Successfule0Z //e0ZI3??@?@?ModerateZ,C@Caucasian - American IndianZReal Estate Salese0ANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zm!e0e0I have had to recently be treated for my left jaw locking. I first went to my primary care physician and he could not do anything for me so I was treated by a Chiropracter. He unlocked my jaw and relieved the pain.This begins when I was 14 - had surgery at 16 for scleroderma en coup de sabre. A period of approximately 5 year of seizures in my 30's - hystrorectomy for hardened uterus when I was 37 - scarring of my cornea - and arthritis in several joints.e019e0HMassive injections of B-12 directly into affected area - scalp, foreheade016e0e0ZC%#-I take only daily doses of vitamins and herbs3e0Z ''e0Z ))e0Z ++e0Z --e0ZI/e0removal of scleroidal section of scalp on left side - 14 yrs old removal of hardened appendix - 35 years old removal of hardened uterus - 37 years old SuccessfulThis has been an ongoing struggle all my life. Believed to be triggered by severe trauma to area of head where scleraderma first appeared.????@ModerateZC@ caucasianZbehaviour management specialistbYesPositivebbbbbbbbbbbbbbZie0e0pain in the left side of my jaw and it has tempoararily locked on occassion .. nothing severe or long - lasting ... just enough to cause concern then disappear again!suspect: bullous lung disease last winter ... saw a specialist who determined that there was little to be concerned about... did not confirm that diagnosis.e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0ZI3?@?@@@@?@?@@????????Mild??ZD@WhiteZRegisteres Nursee0ONegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0My jaw does "lock up" briefly from time to time - also, I tend to "gring" my back teeth - not while asleep, but I while I'm awake.Z%e0approx 33-35 years of agee06Plaquenil therapy appeared to slow progression of sx'se0currently (43years old)e0e0LI'm no longer taking plaquenil - I suspect this is why the sx's have sped up none known1e0Z ''e0Z ))e0Z ++e0Z --e0Z'1/e0The doctor did surgery on my "good eye" (right)to make it appear more symmetrical to my affected eye (right) - It did make my eyes more symmetrical, but now my right eye appears to be receding again and my eyes are about as asymmetrical now as they were bSomewhat SuccessfulZI3???? Very MildZ D@Z>-Administrative Assistant Construction Companye0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0ZbbZ+e0started 4 ended 4e0Z e0Z! e0e0Z%$3e0Z ''e0Z-+)e0Somewhat Successfule0Z --e0Z1/e0silicone implant for cheekbone - also had surgeries to remove excess tissue. Was always around 100 lbs. Now am 120 so face put on weight and sagged - bummer. Need facelift or removal - going to get second opinion - surgeon concerned about nerve damage wit SuccessfulZI3 Very SevereZE@WhiteZ#automotive paintere0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z+'$1e0 Unsuccessfule0Z&+)e0 Unsuccessfule0Z --e0Z //e0ZI3???ModerateZE@ united StatesZ housewifee0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0\I have always had cood hads-I have carpul tunel and sonetimes my hands turn blu-black color.e0e0Zmy left side(face-leg-foot-arm and hand has gone numb and my right foot also. no medical reason yhat the dr's can findi have high blood pressure-controled with medicatione0Z e0Z bZ4" e0e0After birth of first childZ%$0e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0ZF3??@@@?@@ZIHe0e0ZF@ CaucasianZ,house wife / "Hallmark" card clerk part timee0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z3'$10e0Somewhat Successfule0ZM-)e0Somewhat Successfule0Somewhat Successfule0Z //e0ZI3?@??@???@SevereZ F@Irish caucasianZMedical Laboratory techniciane0ONegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0qI would rate it as moderate. My jaws crack every time I open my mouth but it's because my jaws are an uneven sizeZ1e0Possibly ~ 18 years olde0Zs"e0 14 years olde0e0@Probably just a growing spurt, that may have emphasised it more.Z+'$3e0 Unsuccessfule0Z&+)e0 Unsuccessfule0Z --e0Z //e0ZI2One of the reasons I was given for the lack of success by the surgeon was that the site where they took the flap/graft from (on my back, same side as the affected side of my face)seemed to have smaller than expected blood vessels. Near this site I also haModerateZG@EnglishZRegistered NursebOPositivebbbbbbbbbbbbbbZe0e0Z e0Ze0Mild atrophy to left cheek, no further sign since derma fat graft but new atrophy has begun in my hairline over last year ( just above my coupe de sabre )e0Z! e0e0Z)'$2e0 Successfule0Z ))e0Z ++e0Z --e0Z //e0Z@I2ederma fat graft, donor site lower abdo, fat injections post to tidy up a few depressions around graft?????????? Very Mild??Z G@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0ZF3ZIHe0e0Z H@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''bZ ))e0Z ++e0Z --e0Z //e0ZF3ZIHe0e0ZH@ English andZ#Teacher and writere0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0I have always had problems with the cold and my fingers. It takes a small amount of cold to produce painful digits. Along with this extreme discomfort comes swelling of the fingers and the loss of color. As they warm they may tingle and become red but stie0e0ZWhat as list! I have non symtematic asthma which is a chronic condition. Also chronic is levo scoliosis with rotation of the vertebrae, mostly in the lumbar spine. My deceased mother was afflicted with rheumatoid arthritis. I have a history of arthritis, e0Z e0Z e0Z" e0e0It seems to me the atrophy on the right side of my face did not happen at the same time the coup de sabre occurred. I think the facial atrophy, while much slower, happened about 15 years prior to the appearance of the coup de sabre. NOTE: Not being perfecZ%$Nonee0Z ''e0Z ))e0Z ++e0Z --e0Z //e0ZI3@?@?@?@@?@@@?@@@@@@@Moderate@@Z I@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0ZF3ZIHe0e0ZI@EnglishZ School girle0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0(My mother suffers from Raynaud's diseasee0e0ZnDaunes syndrome (hope the spelling is correct) Constant runny nose as an infant leading to removal of adenoidse0Z bZ e0Z! e0e0Z2'$1e0Somewhat_successfule0Z ))e0Z ++e0Z --e0Z //e0ZI3????@MildZ J@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0ZF3ZIHe0e0Z1 J@ German/French/Pennsylvania DutchZ  Event Plannere0ANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Qusually my hands and feet are colder than anyone elses. especially in the summer.e0e0jaw was too small for my teeth. had to have braces because of buck teeth and many teeth pulled because my jaw was too small for all my teeth. even had my lower wisdom teeth out at the age of seven.Z e0fourteene0{the doctor that i have been seeing said that the disease's course usually runs about ten years. mine, however, took twelve.e0Z! e0e0Z4'$ twoe0Somewhat Successfule0Z )) e0Z$-+ e0 Successfule0Z1/ e0nthe second surgery was to shave down my jaw bone (actually my rib) because it hadn't rounded off within a year SuccessfulZI3 ?@??????MildZ !K@Z !e0Z!e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z!e0e0Z !e0Z !e0Z !e0Z! !e0e0Z %%!e0Z ''!e0Z ))!e0Z ++!bZ --!e0Z //!e0ZF3!ZIH!e0e0Z"K@BRITISHZ)"ADMINISTRATOR/SALESe0AZ"e0e0e0e0e0e0e0e0e0e0e0e0e0e0YEARS AGO I NOTICED MY HANDS WOULD WRINKLE UP LIKE VERY OLD HANDS THEN GO NORMAL WHEN I WAS YOUNGER. MY FINGERS ACHE SOMETIMES AND YES HAVE FELT COLD OFF AND ON EVEN IN THE SUMMER. I HAVE ALSO EXPERIENCE NUMBNESS IN THE HANDSe0e0I HAVE ALWAYS HAD THE JAW PROBLEM. MY PLASTIC SURGEON HAD SAID THE JAW IS NOT CONNECTED AT ALL. I KNOW IT IS. IT CAN BE VERY PAINFUL AND WORSE WHEN I AM STRESSED OUT. I CLENCH MY TEETH A LOT THIS DOES NOT HELP. THE INSIDE OF MY MOUTH IS DIFFERENT FROM THEEYES, STOMACH, PAINFUL JOINTS, BACK PROBLEMS, HEADACHES, NECK PROBLEMS, DEPRESSION (ALL IN THE MIND OF COURSE, ACCORDING TO THE DOCTORS).e0Z "e0Z-!"e0 NOT REALLYe0e0Z%#"MY ATROPHY SEEMED TO HAVE STOPPED BEFORE I HAD ANY OPERATIONS. (BEFORE 37 YEARS OF AGE) AFTER THE 3RD OPERATION THE ATROPHY CAME BACK, THIS TIME AROUND THE EYE SOCKET, TEMPLE,MOUTH AND ITS SEEMS LIKE THE SIDE OF MY HEAD AS WELL. I AM NOW 44 AND HAVING WOR4e0Z ''"e0Z-+)"e0Somewhat Successfule0Z --"e0Z //"e0ZI2"AFTER HAVING THE OPERATIONS I AM SOMEWHAT MISTIFIED AS TO WHETHER WHAT PAIN IS DUE TO THE PROCEEDURE OR THE ONGOING ATROPHY. I STILL HAVE A LOT OF PAIN IN THE FACE. I DO NOT KNOW IF THE ATROPHY IS ACTUALLY EATING THE MUSCLE IMPLANT UNDERNEATH AS THE AFFEC@?@@??@?@?? Very SevereZC#L@2Australia - Irish, Welsh, English, French, SpanishZ#Public Servante0BPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z:#e0e0Quite severe spasms from 12 to 40+ - haven't had one for a while now (I am 46). Mouth used to snap shut with no warning - I often bit the inside of my cheek or tongue - very painful 'knotted muscle' at temple on my affected side - and I couldn't open my mI have small cysts - forearm, palm, and abdomen - about 5 all up. Doctor said they were nothing to worry about. After a recent health check at my work - I was referred to my doctor as my cholesterol was so low it didnt register on the machine. Doctor orgae0About 30e0Z%!#e0Noe0e0Z2'$#3e0Somewhat Successfule0Z-+)#e0Somewhat Successfule0Z --#e0Z //#e0ZI3#?@?????SevereZ$L@american/whiteZ$ pharmaciste0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z$e0e0Z$The eye on my affected side has been irritated for the last 2 months. I have been to 2 eye doctors and neither has been able to find anything wrong.e0I don't remembere0Z"$e032e0e0I had my first reconstructive surgery on my forehead then became pregnant 3 months later so I am not sure which was the reason for the speed-up. I was also pregnant at 18 but did not notice any change at that time.Z%$$1e0Z ''$e0Z ))$e0Z--+$e0Somewhat Successfule0Z //$e0ZI3$??@?@??@@???ModerateZ&%M@United Kingdom originZ%)Intelligence Operator - Canadian Militarye0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0I'm always cold, more so than just my hands. It has to be nice and hot for me to be comfortable. It is not just that I feel cold, I am cold to the touch. My fingers always go a waxy yellow/white when they are cold.e0e0Z?%I've never been diagnosed with immflammatory bowel disease as such, but I've had a problem since birth with my bowels. Most of my childhood I had constipation problems so much so that my parents had to physically help me go to the bathroom when I was a che0"I believe it stopped about age 30.e0Z"%e0Between 25 - 27e0e0xIt may have been because of weight training as I lost a lot of body fat at that time, and thus it became more noticeableZ&'%%e0 Unsuccessfule0Z ))%e0Z--+%e0Somewhat Successfule0ZI/%e0Three orbital props were inserted and then removed as they caused double vision. My left eye is no longer propped up yet I now have double vision. It was extremely unsuccessful, and only caused more problems. Carved off some of left lower jaw bone. It was UnsuccessfulI was suppose to have some ear carilege used to build up the inside of my left nostril so that I could actually get better oxyen intake, but it was never done. After the other disasterous surgery, I've never been keen for another surgeon to touch me.?@?@????@?SevereZ &M@Z &e0Z&e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z&e0e0Z &e0Z &e0Z &e0Z! &bbZ %%&e0Z ''&e0Z ))&e0Z ++&e0Z --&e0Z //&e0ZF3&ZIH&e0e0Z 'N@Z 'e0Z'e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z'e0e0Z 'e0Z 'e0Z 'e0Z! 'e0e0Z %%'e0Z '''e0Z ))'e0Z ++'e0Z --'e0Z //'e0ZF3'ZIH'e0e0Z (N@Z (e0Z(e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z(e0e0Z (e0Z (e0Z (e0Z! (e0e0Z %%(e0Z ''(e0Z ))(e0Z ++(e0Z --(e0Z //(e0ZF3(ZIH(e0e0Z)O@WhiteZ) Housewifee0ANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z)e0e0Z#)e0maybe about 16 years olde0&Maybe the contraceptibe combined pill?e026e0e0After childbirth possibly when hormones are settling back into routine. When not on the pill. Noticed a dentation in my cheek bone area so went back on pill (and now fingers crossed) seems to have stopped.At times of stress ie bereavement, house move, I experience pain in the areas affected on my l.h side of face. Could this be a trigger?Z %%)e0Z '')e0Z )))e0Z ++)e0Z --)e0Z //)e0ZI3)@@@?@?ModerateZ *O@Z *e0Z*e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z*e0e0Z *e0Z *bZ *e0Z! *e0e0Z %%*e0Z ''*e0Z ))*e0Z ++*e0Z --*e0Z //*e0ZF3*ZIH*e0e0Z +P@White/CaucasianZ5+$Front Office Assistant/Dental Officee0Z?+e0e0e0e0e0e0e0e0e0e0e0e0e0e0My hands do get very cold all the time. It seems like if I am sitting for a small period of time, they get that way, they also turn red, or sometimes a yellowish tint.e0e0Z+Yes, my loss of hearing in my left ear. The Iritis this past winter kind of made me wonder where I got that from. I had Iritis in my Left eye. I also have a slight asthigmatism in my left eye. Sometimes,my left eye twitches, my right one does not.e0I was about 17 or 18e0My doctor said it should stop when my face stops growing, and I had my surgery when I was 18, it had seemed to have stopped at that pointe0Z! +e0e0Z)'$+3e0 Successfule0Z ))+e0Z +++e0Z --+e0Z'1/+e0When I was about 11 Years old, I had a surgery on my left ear to repair a perferated ear drum. about 6 months after that surgery, I started loosing my hearing, then I started noticing a change in my facial features, such as the atrophy on my left side. WhSomewhat SuccessfulZI3+@@@??@?ModerateZ",@P@white - caucasionZ,being a 4 year old kide0ANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z,e0e0Z ,e0Z,e0yI can not tell at this point what Amber's atrophy is doing. I do not see any visible differences than when she was three.e0Z! ,e0e0Z %%,e0Z '',e0Z )),e0Z ++,e0Z --,e0Z //,e0ZI3,MildZ5-P@$1/2 Hungarian, 1/4 Irish, 1/4 GermanZ$-Administrative Asste0Z^-e0e0e0e0e0e0e0e0e0e0e0e0e0e0When I lived in the Midwestern portion of the U.S., Chicago, I always had cold hands and feet. I live in Arizona now and, at my age of 52, NOTHING is cold. Ha Hae0e0Sometimes, it seems like the left-side of my face/jaw gets "stuck" i.e. if I yawn or when I chew something hard, it feels like it sticks. But I've never been unable to fully open or close my mouth.I have not been diagnosed but I think I have fibromyalgia. Everyday, my bones and my muscles ache. I have quite a bit of pain in the back of my neck, my wrists, my knees, my elbows; all the joints. I was tested for rheumatoid arthritis several years ago be0 Late teense0,Just seemed to stop as quickly as it startede0Z! -e0e0Z7-#-It seems that the onset was at about age 9 and it stopped by age 16 or so. I started having surgery at age 14 so I don't know if that stopped the progress.%20 counting silicone injection seriese0 Unsuccessfule0 Successfule0 Unsuccessfule0 Unsuccessfule0ZI/-e0Had silicone injections with a silicone implant to take the place of the unsuccessful bone implat for left cheekbone. Silicone implant still in place and good. SuccessfulI had a series of silicone injections in 1982 consisting of between 50 - 100 injections each during 6 separate treatment dates. Initially I was elated at the results. I looked the closest to normal that I ever did. Now, I have a slight concave spot on lef????????SevereZ .P@Z .e0Z.e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z.e0e0Z .e0Z .e0Z .e0Z! .e0e0Z %%.e0Z ''.e0Z )).e0Z ++.e0Z --.e0Z //.e0ZF3.ZIH.e0e0Z/Q@ New ZealanderZ&/Nursee0ONegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0kThey seem colder than most people's, my feet suffer from the same problem. No colour changes have been seene0e0Z/]I do have diverticulitis. Apart from one acute attack, it has not really caused any problems.e013-14e0Z /e0Z! /e0e0Z %%/e0Z ''/e0Z ))/bZ ++/e0Z --/e0Z ///e0ZI3/???@ModerateZ/0@Q@Born England, Parents JamaicanZ50$Financial Planner/Investment Advisore0Z0e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z@0e0e0&I have muscle spasms from time to timeZ 0e0Z 0e0Z 0e0Z! 0e0e0Z%$03e0Z ''0e0ZM-)0e0Somewhat Successfule0Somewhat Successfule0Z //0e0ZI30?@?@@@??@SevereZD1Q@3Irish, English, German, French, and American IndianZ1School Teachere0Z1e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z1e0e0-Right perforated Temporomandibular Joint discVertigo, two bouts of feeling like I was being pulled to the left while attempting to walk. I was given medication, beta balancer (?) and eventually went away after several weeks.e0Age 11e0Zg%1e0Age 3 and stopped at age 11e0e0A possibility of having pneumonia prior to the onset of PRS and then moving from St. Louis, Missouri to Miami, Florida at age 3 1/2. A new environmental change.qI lost the sight of my left eye at age 23. Eighteen months after the birth of my daughter. No changes since then.Onee0Z ''1e0Z ))1e0Z ++1e0Z --1e0Zw1/1e0XStrabismus surgery of the left eye at age 48, 25 years after sight loss of the left eye. SuccessfulZI31@@@?@@@?MildZ|2R@JHalf Italian, Irish,English, scottish,Dutch...A tiny bit of American indiaHave got second but not firstZ 2e0Z2e0e0e0e0e0e0e0e0e0e0e0e0e0e0I have had some bowel problems. Mainly soft stools and I used to have alot of urgent diarhea before changing my eating habits. I had a colonoscopy and the doctor said everything looked fine. As far as the eyes, I have alot of skin problems, mainly in the e0e0^Only the appearence of my chin now.............it is about a 1/4 inch higher on the left side.Segmental nephritis as a teenager. Tonsilectomy as a child. Inguinal Hernia surgury within the last yr and a half. I fell on the back of my head as a child, suffered a concusione0Z 2e0Z 2e0Z! 2e0e0Z %%2e0Z ''2e0Z ))2e0Z ++2e0Z --2e0Z //2e0ZI22=I was recently diagnosed and have not looked into surgery yet??@?@??????????????Mild??Z93@R@(Caucasian- Irish, English,French, GermanZ 3Legal Assistante0Z3e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z3e0e0Z93Joint pain Fatiguee0 Late 20'se0Z 3e0Z! 3e0e0Z %%3e0Z ''3e0Z ))3e0Z ++3e0Z --3e0Z //3e0ZI33ModerateZ.4R@french- Canadian European JewZ4studente00Positivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z4e0e0Z!4e09e0Gpossibly methotrexate injections ??? don't know if it would have anywaye07e0e0Z %%4e0Z ''4e0Z ))4e0Z ++4e0Z --4e0Z //4e0ZI34@SevereZ5R@whiteZ&5stay at home mome00Za5e0e0e0e0e0e0e0e0e0e0e0e0e0e0For years I have noticed that my hands were always cold and would kind of look blue or purplish as well as certain parts of my face and lips when it was cold out. My one friend used to call me a smurf.e0e0Z5I have spine scoliosis,my left eye is slightly crossed but can control it(lazy eye) My vision in the left is 20/100 my right is 20/20 ans slightly far sighted. I don't have eyelashes on the bottom of my right eye.e017e0Z 5e0Z! 5bbZ2'$51e0Somewhat Successfule0Z ))5e0Z ++5e0Z --5e0Z //5e0ZI25I had fat injected in my face taken from my stomach. It was fairly successful although only about 15% stayed and the rest was absorbed. I was going to have reconstructive sergury but found out I was pregnant and decided to forget it.I did have collegen in@??@?????@MildZ6S@WhiteZ6Court Reportere0Z6e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z%6e0e0Currently, my jaw is constantly aching. I often open and shut my mouth just to relieve the tightness. As far as "lock jaw", only when I was 16 (1986) did I have an episode of something similar. I had a terribly high fever and was very sick and my jaw justEver since birth, I was constantly ill with tonsillitis and colds, often losing my voice for all of winter. Finally, in 1995, I had my tonsils removed and have been fine since. In 1997, I went to the doctor for numbness in my feet. They had scheduled me fe0Z 6e0Z 6e0Z! 6e0e0Z%#6Smoking seems to exacerbate the problems and sensations. I quite smoking and may smoke just one occasionally when stressed. I run faithfully and lift weights and do toning exercises with some Yoga and sports. That seems to help a great deal as far as the 3e0Z ''6e0Z ))6e0Z ++6e0Z --6e0Z0/6e0My operations were unrelated to this disease. I just found out about this disease only 22 days ago and did not realize there were even courses of therapy, treatment or surgical procedures available. I have just begun my research regarding this.ZI36?@@???@?MildZ'7@S@francaise (europeenne)Z7 infirmieree0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0@my fingers are becoming white (sometimes red) when its very colde0e0Z 7e0Z 7e0Zc"7e030e0e0:the stress (I was doing examens when it comes on the face)Z %%7e0Z ''7e0Z ))7e0Z ++7e0Z --7e0Z //7e0ZI37@@?@???SevereZN8S@=White South African (English mother and South African father)Z8%Advertising / Full time mother of twoe0ONegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z8e0e0When my PRS was at its worst (in and around 1987 when I was 20 years of age), I would have muscle spasms/cramps in my jaw. My jaw would lock in a terribly painful muscular spasm (the muscles along the jaw and the whole cheek area would seem to lock/knot i8No - nothing else - otherwise perfectly healthy and welle0!28 (10 years after it had startede0ZO!8e0,No, but it was at its worst from 1987 - 1990e0e0Z'#8]No - to me it just had to run its natural course. Nothing helped speed it up or slow it down.D1 gen anaesthetic operation and 3 minor local anaesthetic procedurese0 Unsuccessfule0Z ))8e0Z ++8e0Z --8e0Z1/8e0It's not surgical but a procedure (x3) whereby restylane and perlane products have been injected into the affected / depressed area under local anaesthetic. I think this has been good for me as mine is only a soft tissue problem ie bone is fine. We don't  SuccessfulZI38@??@@???@?@ModerateZ)9S@German, Turkish, AfricanZ9studente0ZX9e0e0e0e0e0e0e0e0e0e0e0e0e0e0FI am thin and have always been told it is from inefficient circulatione0e0Fnot exactly but ove the years I am able to open my mouth less and less#anorexia nervosa, sinus infections,e0Z 9e0Z"9e025e0e0sI don't know if it's related but the syptoms seemed to speed up during a time of unrelated extreme emotional stressZ %%9e0Z ''9e0Z ))9e0Z ++9e0Z --9e0Z //9e0ZI39@?@?@???@ Very MildZ:T@WhiteZ: minor childe0BNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z:e0e0Z::)difficulty falling asleep, staying asleepe0Z :e0Z$!:e08e0e0Z %%:e0Z '':e0Z )):e0Z ++:e0Z --:e0Z //:e0ZI3:??@@@@@??@??MildZ);@T@New Zealand Maori/PakehaZ.;University studente0ANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0fIm very sensitive to the cold, my hands sometimes turn white/blue and if i get really cold i feel sicke0e0Z;e015e0Z ;e0Z! ;e0e0Z %%;e0Z '';e0Z ));e0Z ++;e0Z --;e0Z //;e0ZI3;@?@&@??@???????Moderate??Z<T@GermanZ< IS-TechnicalbZ<e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z?<e0e0%I do have spasms sometimes in my jaw.Z<e05-6e0ZD!<e0!It started very aggressively at 3e0e0Z-$<probably around 20e0Somewhat Successfule0 Unsuccessfule0Somewhat Successfule0 Successfule0Z$1/<e0I have had my nose straightened with the use of ear cartilege. Had my lower eyelid thickened a bit with some of the skin from my upper eyelid. Had my upper lip thickened with grafting from the lining of my mouth. I have probably forgotten some of them.Somewhat SuccessfulZI3<????? Very SevereZb=T@QAustrian & Irish (biological father) French & Cherokee Indian (biological mother)Z=4Sr. Litigation Paralegal, musician and music teachere0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZO=e0e0As stated in Part I of the survey, a neurologist (Alan Naarden, M.D.) ordered an MRI of my jaw in January, which reflects severe degeneration of the jaw bones which he interprets as a severe case of TMJ. I have been referred to a dentist to see about gettI am being treated for bi-polar manic depression. I have also been treated for marijuana dependence. I was initially diagnosed with severe depression in 1991; I did not know until last summer that feeling like I am on the top of the world with endless enee014 - started then and stoppede0Z%!=e037e0e0Z4'$=onee0Somewhat Successfule0Z-+)=e0Somewhat Successfule0Z --=e0Z //=e0ZI1=Somewhat SuccessfulRecovery is taking A LOT longer than the surgeon said it would. The surgery did take longer and was more extensive than he originally planned, also. He said he had to 're-do' it after he'd done it the first time, because the flesh wasn't the proper color.??@???@@@???????Mild??Z>U@KoreanZ> researchere0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z>e0e0Z>e024e0ZV">e026e0e0-I think.. Fatigue and stress make it speed upZ2'$>1e0Somewhat Successfule0Z ))>e0Z ++>e0Z -->e0Z //>e0ZI3>??@?@@?????????Severe??Z!?@U@Spanish-AmericanZ.?Administrative Assistante0BZ?e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z?e0e0Z?e010?e0Z ?e0Z" ?e0e0hI really didn't pay attention to how long it took, how old I was, or whether it stopped or speeded up???Z%$?3e0Z-)'?e0Somewhat Successfule0Z ++?e0Z --?e0ZI/?e0piece of foam shaped to fit over my right side by my ear and jawline at age 18 in addition to fatty tissue taken from my stomach to fill in around nose and cheek-bone down Unsuccessfuleventually the "piece of foam" has shrunk and broken up and I think is still in by my jaw someplace; it seems to be hanging in the throat area immediately below the jaw kind of in a lump. I guess I just forget it's there and have never thought about havin??@?????SevereZ @U@Z"@Software Engineere0Z@e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z@e0e0Z@e016e0Z @e0Z! @e0e0Z2'$@5e0Somewhat Successfule0Z ))@e0Z ++@e0Z --@e0Z1/@e0jHad excesive fat after graft (expecting some absorption) and went for a type of lipo to remove excess fat.Somewhat SuccessfulZI3@?????@ModerateZ AU@Z Ae0ZAe0e0e0e0e0e0e0e0e0e0e0e0e0e0ZAe0e0Z Ae0Z Ae0Z Ae0Z! Ae0e0Z %%Ae0Z ''Ae0Z ))Ae0Z ++Ae0Z --Ae0Z //Ae0ZF3AZIHAe0e0Z BV@Germany / IrishZ.Bsales - construction industrye0ZBe0e0e0e0e0e0e0e0e0e0e0e0e0e0ZBe0e0Sometimes it tightens up so much in the afflicted area that you can see the tension and it hurts!I have to try and stretch it just like a cramp in any other muscle.Z@Be0&based on photos, it was active 5 yearse0Z Be0Z! Be0e0Z'#BWas a healthy child - first noticed at age 13 and it progressed so slowly that as first the damage was not noticible to my family. Per photos, seemed to have stopped at age 184e0 Successfule0Z ))Be0Z ++Be0Z --Be0Z'1/Be0Surface laser to smooth out the deep furrows. It did make a difference, however, the part where the muscle still shows (chin closest to the center)is noticible when I move my mouth. In most people this area has "padding" but mine does not so you see the mSomewhat SuccessfulZI3B???MildZ C@V@Z Ce0ZCe0e0e0e0e0e0e0e0e0e0e0e0e0e0ZCe0e0Z Ce0Z Ce0Z Ce0Z! Ce0e0Z %%Ce0Z ''CbZ ))Ce0Z ++Ce0Z --Ce0Z //Ce0ZF3CZIHCe0e0ZDV@whiteZDchilde0ZDe0e0e0e0e0e0e0e0e0e0e0e0e0e0ZDe0e0ZDRPsoriasis (on scalp). That's what we thought caused her bald spot a long time ago.e0#we think it is stopping now - at 10e0Zh!De0ELast year at age 9 was a dramatic year of development of this diseasee0e0Z##DJust a growth spurt?Z %%De0Z ''De0Z ))De0Z ++De0Z --De0Z //De0ZI3D?????ModerateZ)EV@scottish,english descentZ E hairstylise0AZEe0e0e0e0e0e0e0e0e0e0e0e0e0e0ZEe0e0Z"Ee028e0qi had a dermis graph inserted into my cheek and chin. i have not noticed anything more and that was 14 years ago.e0Ki had 2 pregnancies between age 23 and 26 which is when it was at its worsee0e0it could have been the pregnancies or maybe it was the timing of having it for so long and it had just about burned itself out i am not sure.Z+'$E3e0 Unsuccessfule0Z ))Ee0Z ++Ee0Z --Ee0Z1/Ee0bi had a silicone prothesis inserted but i had it removed later because it looked and felt strange. UnsuccessfulZI3E???@?MildZFW@ Mostly IrishZFcooke0OZfFe0e0e0e0e0e0e0e0e0e0e0e0e0e0The first time I diagnosed way back in 1976, the plastic surgeon had me see an opthalmologist, he told me that I had debris in my right eye. He gave me steroid drops, never saw him again. When I was 30, 11 years later, I needed to wear glasses, my eye doce0e0OOccasionally the muscles under my jaw will cramp, it is just a momentary thing.oI had two grand mal seizures when I was 44. I mistakenly called them petit mal on the first part of the survey.e0ZFe0hThe atrophy seemed to occur almost overnight when I was 15, it has not changed significantly since then.e0Z! Fe0e0Z %%Fe0Z$)'Fe0 Successfule0Z ++Fe0Z --Fe0Z1/Fe0I recieved 11cc of liquid silicone in my cheek and chin in 1974. Dr. Joseph Murray of Peter Bent Brigham Hospital in Boston MA (now known as Brigham and Womens Hospital), was participating in a goverment sanctioned test on silicone injections. He was the  SuccessfulZI3F?@@???MildZ!G@W@Central AmericanZ*GPreschool Teacher/Studente0ZGe0e0e0e0e0e0e0e0e0e0e0e0e0e0;My hands are always cold. They are never clammy, just cold.e0e0Z Ge0Z!Ge0`I had reconstructive surgery, so I am not sure if it ever slowed down because I have an implant.e019e0e0Z2'$G8e0Somewhat Successfule0Z ))Ge0Z--+Ge0Somewhat Successfule0Z 1/Ge0I have had cranial reconstruction and around the orbit of the eye. The first surgery was not successful because the orbit made my eye shift and made my eye look worse than before. I have also had to have eyelid surgery because there was too much scar tiss UnsuccessfulZI3G?????@??SevereZHW@CHINESEZHNURSEe0BPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0-HAVE SWEATY PALMS(NOT SEVERE), AND COLD HANDSe0e0FEEL TIGHTNESS OF THE LEFT JAW. SOMETIMES WHEN I OPEN MY MOUTH, I CAN FEEL THE JAW MOVING UP AND DOWN (MECHANICALLY). COULD NOT OPEN MY MOUTH BUT RELIEVE AFTER TAKING PHENYTOIN AND ANAREXI'm Serene Oh from Singapore. I think I've missed out something which may or may not be relevant. I had a lipoma removed in late 1997. It's located near my right scapular. Guess that's about all. Really hope to hear from you soon.e0Z He0Z He0Z! He0e0Z##HI DON'T SEE THE SPEEDING OR STOPPING, BUT I OBSERVED THAT I'VE INCREASING HEADACHE AND TIGHTNESS OF MY JAW WHEN I'M STRESS, OR EMOTIONALLY CHARGED, OR SMILE/LAUGH EXCESSIVELYZ %%He0Z ''He0Z ))He0Z ++He0Z --He0Z //He0ZI3H@????@MildZIW@HispanicZ ISales Associatee0ZIe0e0e0e0e0e0e0e0e0e0e0e0e0e0ZIe0e0Z Ie0Z Ie0Z Ie0Z! Ie0e0Z+'$I1e0 Unsuccessfule0Z ))Ie0Z&-+Ie0 Unsuccessfule0Z //Ie0Z:I1I UnsuccessfulPThese type of surgery only lasted a couple of months, now my symptoms are worse.@????@??????????Moderate??ZJX@ CaucasianZ;J*Stay at home Mother, formally a journaliste0ZJPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZJe0e0Sometimes I find it difficult to chew on the left side. This is not due to pain or stiffness but just a general lack of strength/mobility.Z~"Je013 or 14e0.Onset of menstruation and reaching full growthe0late 20se0e0I believe pregnancy reactivated the atrophy, but am not absolutely certain of that, because the area affected (chin) had fat grafts in the 1970s and it has also occurred to me that what I am seeing is a deterioration of those grafts and a reverting back tZK)$J5e0Somewhat Successfule0 Unsuccessfule0Z ++Je0Z --Je0Z //Je0ZI3J?????SevereZ K@X@Z Ke0ZKe0e0e0e0e0e0e0e0e0e0e0e0e0e0ZKe0e0Z Ke0Z Ke0Z Ke0Z! Ke0e0Z %%Ke0Z ''Ke0Z ))Ke0Z ++Ke0Z --Ke0Z //Ke0ZF3KZIHKe0e0Z7LX@&Irish, Indian, German, Italian mixtureZLdental hygieniste0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0sI don't believe I have color change but frequently I have cold fingers especiallly the fifth fingers on both hands.e0e0A couple of times in my early twenties I had what was thought to be a TMJ dysfunction. I clinch my teeth now. Also, I appear to have somewhat short root structure of my teeth on radiographs.Z Le0Z Le0Z Le0Z! Le0e0Z%$L5e0ZF+'Le0 Unsuccessfule0Somewhat Successfule0Z --Le0Z //Le0ZI3L@???????MildZMX@ caucasianZMRegistered Nursee0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZMe0e0SLight malocclusionLPolymyositis resulting from an anti-depressant "Serzone" Anxiety. Scoliosis.e0Z Me0Z Me0Z! Me0e0Z2'$M4e0Somewhat Successfule0Z ))Me0Z ++Me0Z --Me0ZK1/Me0#gore-tex implant and cheek implantsSomewhat SuccessfulZI3M@?@@@@??@?????????Moderate??ZNY@Irish AmericanZ.NNuclear Medicine Technologiste0ZNPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0I tend to be cold all over. I have plenty of "padding" (I'm overweight), but I still seem to always be cold. Occasionally when I get extremely cold extremities, my hands seem to appear whitee0e0I've had TMJ. On occasions when I yawn, my jaw would lock open. I have since learned to yawn "off center" to avoid having my jaw lock.I have very severe allergies to mold, fungus, dust, smoke, pollen, grass and trees - - - mostly mother nature. I've been treated with oral meds (currently 10mg QD Zyrtec and started taking allergy shot 1 year ago. My allergist, Dr. Gailen Marshall, said he0Z Ne0Z Ne0Z! Ne0e0Z%#NIt seems as though I did not develop PRS until I was about 40 to 41 years old. It seems to have progressed (very slowly) since then and since it is slow, I can not tell if the Plaquenil has made any difference.NONEe0Z ''Ne0Z ))Ne0Z ++Ne0Z --Ne0Z //Ne0ZI3N?MildZ3O?"American of Irish & German descentZO Library Clerke0BPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZOe0e0Z Oe0Z Oe0Z%!Oe0Noe0e0Z##OJon, this is a tough question because it is hard to tell whether facial changes take place because of the natural aging process or from the atropy advancing.Z %%Oe0Z ''Oe0Z ))Oe0Z ++Oe0Z --Oe0Z //Oe0ZI3O@?@???ModerateZ!P@Australian-WhiteZPStudente0OZPe0e0e0e0e0e0e0e0e0e0e0e0e0e0ZPe0e0ZbP8Petit mal when I was younger. Also I suffer from excma.e0 16 years olde0Z/!Pe0 12 years olde0e0Z4'$P0nee0Somewhat Successfule0Z ))Pe0Z$-+Pe0 Successfule0Z //Pe0Z-I2PSI had to have artificial bone inserted as my skull was thin in parts due to Romberg@@@@??@????????Moderate??Z3Q@"American born, parents from PolandZQMedical office nursee0BPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Cfingers and toes become cold and numb quite easily when not active.e0e0The jaw will become lodged in a certain position. This does not happen often but it does happen suddenly. I have learned to just relax myself and my jaw and it will relax the muscles.i suffer from headaches both sinus, tension and migraine. It seems I have a headache of some degree every day. Most of them are treatable with sinus medicine and motrin. Occassionaly the migraine needs Medrin.I also have a sensitivity to flickering lightse0 40 years olde0Z"Qe0 32years olde0e0zIt started after my second pregnancy. I noticed a darking spot on my right eye develop before the facial changes occurred.Z6'$Qthreee0Somewhat Successfule0Z ))Qe0Z ++Qe0Z --Qe0Z0/Qe0I had one fat implant operation that was somewhat successful except that the implant 'took' a little off the mark. I have also had two auto fat injections that did not last very long at all. The fat was reabsorbed quite rapidly.ZI3Q??@?@?@???@@???????Moderate??Z!R@english/scottishZRcustomer service repe0BNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZRe0e0Z.Re0about 6 or 7 i thinke0Z%!Re0Noe0e0Z3'$R approx 22e0 Unsuccessfule0Z=-)Re0 Unsuccessfule0 Successfule0Z //Re0ZI3R@@??@?@?@?@??@@@@@@@Severe@@ZS@ caucasianZSe0BNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZSe0e0Z Se0Z Se0Z-!Se0 early 20'se0e0Z2'$S3e0Somewhat Successfule0Z$+)Se0 Successfule0Z --Se0Z //Se0ZI3S??@??@??@???????Moderate??Z T@Irish, ScottishZTstudente0ZTe0e0e0e0e0e0e0e0e0e0e0e0e0e0ZTe0e0ZAT0Severe sinus infections on affected side of facee0Z Te0Z Te0Z! Te0e0Z %%Te0Z ''Te0Z ))Te0Z ++Te0Z --Te0Z //Te0ZI3T???@MildZRU@ACaucasian (both parents & all grandparents etc. are from England)Z$UCall Centre managere0Z UNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0My toes often loose their feeling and go purple or extremely white (like there is no blood getting to them). Both my GP and accupuncturist said I have Raynauds phenomenon / disease in a mild form (I believe this is the loss of circulation to extremities. e0e0fI get really sore spots at the angel my jaw opens and closes. Sometimes so sore I can't even touch it.Z1Ue0early 30's. I am now 37e0Z Ue0Z! Ue0e0Z %%Ue0Z ''Ue0Z ))Ue0Z ++UbZ --Ue0ZI/Ue0I had a plastic surgeon who felt it was safer and more feasible to make the healthy side look more similar to the unhealthy side. He did a complete facelift and took fat away from the healthy eye lid to give more of an even appearance. So it was a cut froSomewhat SuccessfulI still have a fairly flat dent on my left cheek where all I see is bone. Skin is very thin on that cheek bone. Left eye is more sunken than right eye.@@@?@@?MildZV @englishZV bookkeepere0ZVe0e0e0e0e0e0e0e0e0e0e0e0e0e0ZVe0e0lMy mouth doesn't open very far .... the jaw doesn't stretch much. also my lower right teeth are falling out.gI am on medicine for depression. Last year my 46 year old husband died. we were married for two months.e0about 35 perhaps.e0Z%Ve032e0e0'being pregnant I feel really sped it upwhen I'm tired it is more obvious. When I[m very stressed it seems to speed up. I think it went active again last year when my husband died.nonee0Z ''Ve0Z ))Ve0Z ++Ve0Z --Ve0Z //Ve0ZI3V@@@???@????????Severe??ZW"@whiteZWRNe0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZWe0e0ZWe028e0Z We0Z! We0e0Z+'$W4e0 Unsuccessfule0Z ))We0Z ++We0Z --We0Z //We0ZI3W@??????ModerateZX$@LatinZXStudente0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z8Xe0e0Sometimes my jaw is locked and it's a lot of strain as I feel there is some kind of cramp in the muscles of my neck and below my toungue. Usually happens when I'm nervous or in a stress situation; also in cold environments.>When I was a toddler I had bronquitis (is it spelt that way?).e07No, I am not even sure if it stopped but I guess it dide0The athrophy became more and more evident as the rest of my body developed normally, but as far as I'm concerned it stopped in my early teens (about 14 years old).e0Z! Xe0e0Z %%Xe0Z ''Xe0Z ))Xe0Z ++Xe0Z --Xe0Z //Xe0ZI3X??@?@@?@?SevereZY&@ CaucasianZY Housewifee0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZYe0e0I have muscle spasms in my Romberg's affected jaw muscle. When I was diagnosed at age 16, the spasms were quite severe. As I have grown older, the spasms are still there but not to the same degree. Now I get quick little spasms that cause me to bite the iI have tissue loss on my side above my waist on the Rombergs affected side. It is a deep crease there. It has not caused me any medical problems that I know of.e0!I feel it stopped in my late 20'se0My atrophy took most of the tissue on my right side cheek and chin. I also have bone loss in my forehead and temple areas and around my eye. My atrophy was a very slow process over many years. It started around the age of 9 and had burned itself out in mye0Z! Ye0e0Z)'$Y4e0 Successfule0Z;-)Ye0 Successfule0 Successfule0Z //Ye0Z&I2YII do not believe it is possible for surgeons to give us perfect symmetry.@?@@?@@@???????? Very Severe??ZZ*@whiteZ@Z/Production Manager for Screen Printing Divisione0ZZe0e0e0e0e0e0e0e0e0e0e0e0e0e0VI think it's because I'm a smoker. My dermatologist does not think that it's Raynauds.e0e0~Had TMJ for over 3 years now. My dentist, orthodontist and oral surgeon do not recommend anything other than wearing a splint.Let's see, where do I start. Allergies is first and foremost. I have seen and opthamologist because of a pseudo tumor behind my left eye. (The affected side) I also had a problem earlier this year due to many headaches. For the most part, I get sick realle017e0Zz"Ze0 around 19e0e0JPossibly stress, I had just left college and took on a 40 hour a week job.Z %%Ze0Z ''Ze0Z ))Ze0Z ++Ze0Z --Ze0Z //Ze0ZI3Z????@??@?@??SevereZ [,@Z%[Couldn't fill out form onlineZ [e0Z[e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z[e0e0Z [e0Z [e0Z [e0Z! [e0e0Z %%[e0Z ''[e0Z ))[e0Z ++[e0Z --[e0Z //[e0ZF3[ZIH[e0e0Z\.@WhiteZ\Legal Secretarye0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0I was diagnoised with Raynauds phen. about one year and extreme tiredness before the fat on the right side of my face almost totally disappeared.e0e0I would get muscle spasms under the right jaw since I was 16 years old and I still have them on occasion, I am 39. When the muscle would relax the jaw would not feel so tight, it would come on when yawning widely or sometimes chewing foods.At age 8 I had an ulcer, 11-colitis, at 15-I had a fatty tumor (benign) removed from the left side of my chin, almost immediately after that surgery the rt. side of my chin did not look right, I went through 2 more surgeries from a plastic surgeon at age e0not really, because the face changes so much from intake of salt to hormores that unless it is a major change it is hard to telle0Zp'\e023e0e0after the birth of my second child and I had lost the birth weight, the fat on rt. side of face disappeared also, I am 5-4 and weight 98 lbs after the birth of my sons I weight maybe 95 lbs.not that I know ofO15, to replace the fat tissue to rt. side but totally I have had 18 on my face.e0 Successfule0Z ))\e0Z ++\e0Z --\e0Z1/\e0I do think that at 19 when I had all my wisdom teeth taken out by inpatient surgery I did notice a change in the rt. side of face. SuccessfulZI3\?@??@@????????Moderate??Z]0@HispanicZ?]Microbiologiste0ONegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0{Sometimes my hands and feet get very cold. At night I have to sleep with socks so my feet don't get cold and become purple.e0e0ZN]=Excesive swetting from my armpits. Back problems (scoliosis).e0Z ]e0Z ]e0Z! ]e0e0Z2'$]4e0Somewhat Successfule0Z ))]e0Z&-+]e0 Unsuccessfule0Zi1/]e0JAlloderm in 1999. It helped a lot and the procedure was not to complicated SuccessfulZI3]@@@??????????????Moderate??Z^1@WhiteZ<^ Social workere0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0I have the scleroderma from Rombergs on the left side of my face. I have been diagnosed with colitus, depression,and possibly thyroid trouble when Iwas very younge0e0I use to have the spaams where the area under my jaw on the affected side of my face would get knotted up and I had trouble opening my mouth. This problem has disappeared since I began to take Celexa and Buspar.Z(^e038-39 I think.e0Z ^e0Z! ^e0e0Z %%^e0Z ''^e0Z ))^e0Z ++^e0Z --^e0Z //^e0ZI3^@??@?@??@?????????Moderate??Z'_2@german/english descentZ_rural letter carriere0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZO_e0e0Can't remember what the doctor called it but the joint is not right on the romberg's side of my face. It gets sore sometimes & I cannot fully open my mouth without painjfibro-cystic breast condition had 1/2 my thyroid removed due to tumor...needle biopsy showed hurthle cellse0 late 20'se0Z _e0Z! _e0e0Z %%_e0Z ''_e0Z ))_e0Z ++_e0Z --_e0Z //_e0ZI3_@????????@MildZY`3@HBritish (Irish/Scottish) caucasian (is that the correct spelling !!!???)Z!`Computer Systemse0Z`Negativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z`e0e0Z`{miscarriages and premature birth of baby at 26 weeks which died after 9 days. i have not been successful at having childrene0 pre-teense0Z `e0Z! `e0e0Z%$`1e0Z&)'`e0 Unsuccessfule0Z ++`e0Z --`e0Z 1/`e0After a series of silicone injections over months, I had to have 1 operation to try to drain out silicone that was previously injected but did not stay in the Rombergs areas of face. It moved to areas which had softer tissue. the Rombergs areas had toughe UnsuccessfulZI3`ModerateZ a4@Z'aDidn't fill out first or secondZ ae0Zae0e0e0e0e0e0e0e0e0e0e0e0e0e0Zae0e0Z ae0Z ae0Z ae0Z! ae0e0Z %%ae0Z ''ae0Z ))ae0Z ++ae0Z --ae0Z //ae0ZF3aZIHae0e0Z b5@Z be0Zbe0e0e0e0e0e0e0e0e0e0e0e0e0e0Zbe0e0Z be0Z be0Z be0Z! be0e0Z %%be0Z ''be0Z ))be0Z ++be0Z --be0Z //be0ZF3bZIHbe0e0Zac@Y@P1/4 Scottish & 1/4 Swedish - the rest is a Heinz 57 mix of welsh/german and moreZ$cCorporate Paralegale0ZcNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zce0e0ZhcWHave deveoped allergies in recent years. Sinus infections on left side. Bowel problems.e0Z ce0Z ce0Z! ce0e0Z %%ce0Z ''ce0Z ))ce0Z ++ce0Z --ce0Z //ce0Z173c??@?@Z:?:c???@?@ZXIAce0e0e0e0e0e0Moderatee0e0Z dY@Z de0Zde0e0e0e0e0e0e0e0e0e0e0e0e0e0Zde0e0Z de0Z de0Z de0Z! de0e0Z %%de0Z ''de0Z ))de0Z ++de0Z --de0Z //de0Z:FAde0e0e0e0e0e0ZIHde0e0Z eY@Z ee0Zee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zee0e0Z ee0Z ee0Z ee0Z! ee0e0Z %%ee0Z ''ee0Z ))ee0Z ++ee0Z --ee0Z //ee0Z:FAee0e0e0e0e0e0ZIHee0e0Z fZ@Z fe0Zfe0e0e0e0e0e0e0e0e0e0e0e0e0e0Zfe0e0Z fe0Z fe0Z fe0Z! fe0e0Z %%fe0Z ''fe0Z ))fe0Z ++fe0Z --fe0Z //fe0Z:FAfe0e0e0e0e0e0ZIHfe0e0Z g@Z@Z ge0Zge0e0e0e0e0e0e0e0e0e0e0e0e0e0Zge0e0Z ge0Z ge0Z ge0Z! ge0e0Z %%ge0Z ''ge0Z ))ge0Z ++ge0Z --ge0Z //ge0Z:FAge0e0e0e0e0e0ZIHge0e0Z hZ@Z he0Zhe0e0e0e0e0e0e0e0e0e0e0e0e0e0Zhe0e0Z he0Z he0Z he0Z! he0e0Z %%he0Z ''he0Z ))he0Z ++he0Z --he0Z //he0Z:FAhe0e0e0e0e0e0ZIHhe0e0ZiZ@WhiteZ ie0Zie0e0e0e0e0e0e0e0e0e0e0e0e0e0Zie0e0Z ie0Z ie0Z$!ie09e0e0Z %%ie0Z ''ie0Z ))ie0Z ++ie0Z --ie0Z //ie0ZYIAie0e0e0e0e0e0 Very Milde0e0ZDj[@3French, Irish, Belguim, French Candain and AmericanZj)Sales Clerk and Full time college Studente0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZAje0e0'The doctors have diagniosed me with TMJZ#jb not sure,bZ je0Z! je0e0Z+'$j2e0 Unsuccessfule0Z ))je0Z ++je0Z --je0Z<3/je0vthey put in plates, to build up the bone, one across the cheek (under the eye) and one across the jaw and on the chin.Somewhat SuccessfulThe lipo, that was inserted into the cheek to puff it out, didnt take in the frist surgery and became infected and drain out it after the second.?Z 55j@Z 77j@Z 99j@Z=;j??@ZXIAje0e0e0e0e0e0Moderatee0e0ZVk@[@EI have Scottish, English, German, Irish and Cherokee Indian ancestry.ZkInsurance adjustere0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zke0e0Z ke0ZXke0>I have alot of surgery, so I can't tell if it has slowed down.e0Z! ke0e0Z3'$k17e0Somewhat Successfule0Z-+)ke0Somewhat Successfule0Z --ke0Z //ke0Za92kIt was an awful experience@@@@@@@Z<;k?@Z >>k@ZdI@k??????? Very Severe??Zl[@PolishZl,ex Army officer (22 yrs); now public servante0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zle0e0Z9lHigh blood pressure.e0mid 20se0Z le0Z! le0e0Z`+$l6e0 Successfule0Somewhat Successfule0 Successfule0Z --le0Z //le0Z11lSomewhat SuccessfulZ43l??Z 77l?Z 99l?Z=sometimes if i am chewing gum it locks up and also feel spasmsZ me0Z me0ZK!me0(no,most damage was done in earlier yearse0e0Z%$mnonee0Z ''me0Z ))me0Z ++me0Z --me0Z //me0Zf32mUi am thinking of micro-surgery, i have saw many people do very well with this surgery@Z 55m?Z1;7m?????ZqI>m?????????Severe??Z/n\@french/italian/american indianZnplant pathologiste0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0KNo color change, but I am often cold in my extremities, feet hands and nosee0e0ZnAs a preteen I experienced a time (weeks) when I had joint pains and woke up sore. I went to a doctor at that time, but no diagnosis was made. If I get sick (which is infrequent) it seems to settle in my chest. I used to smoke and had bronchitis. I was toe0Z%ne0RIt is so difficult to tell, I was undiagnosed for so many years I just ignored it.e0In my 30's. I don't know if it speeded up or it was because I married a man 6'4" and he told me it was worsening as he was always looking down at my heade0e0How can I know, but I do believe it's hormonally related. I feel it is increasing now and that hormonally I feel like I am having my last "hurrah" before menopause.None of this is quantitative.nonee0Z ''ne0Z ))ne0Z ++ne0Z --ne0Z0/ne0My "coup de sabre" is only on my head and is covered by my hair. It has just reached my forehead in one spot and I would consider surgery if it crossed my face.Z 33n?Z 55n@Z 99n?Z ==n?ZYIAne0e0e0e0e0e0 Very Milde0e0Zo@\@ CaucasianZoRegistered Nursee0BPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zoe0e0My jaw does not open very far and if made to at the denist office then it is very painful and the pain will last for days. Chewing gum also can hurt my jawI think I listed everything on the last page because I do not know what is relevant and what is not. I just wanted to say for the last question on rating my face. I rated it severebecause of what I looked like as a child. The surgeries have helped some ane0Z'oe0Stopping the pain seems to help it some but I cannot really say that it has stopped or slowed down because the degeneration has been ocurring my whole life, even after the reconstructive surgery my face has always been doing this.e0$as a toddler and around 29 years olde0e0Yes pain seems to make it speed up. I was told as a child that I probably could not have children and so far I have never gotten pregnant.All I can think of is that when I was younger I did smoke some pot and I tried cocaine and it seemed to make it worse. I am embarrassed to admit this but I figure you should know all. But yet I do have to say that smoking the pot did help with the pain, b2e0Somewhat Successfule0Z ))oe0Z ++oe0Z --oe0Z0/oe0I had an inguinal hernia as a child but I do not think that was relevant to this. I did refuse the silicone injections as a child. I am glad now because of the ramifications it has had on others. I was also offered the bone graft but turned that down. I lZI2oI do not have health insurance right now and have not for years and the cost of the care I have received has been tremedous. I have been unable to work for several years due to the pain and yet so far I have not really found any doctor that has been of an@@@?@?@@@?@@?SevereZ/p\@Mother- French / Father-GermanZp-Owner/Vice President - Transportation Companye0ANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zpe0e0My jaw has locked peiodically since I was about 10 years old. I still can not open my mouth wide enough to eat apples or a hamburger. I had braces on my teeth from the time I was 12 until I was 14. This seemed to escalate the jaw problem. Several times my}Xrays showed that part of the bone on the right side of my chin was missing when I was 16 years old. I have Stenosis - L4 L5.e0Z pe0Z"pe0 18 years olde0e0lStress seemed to make it speed up. I had 5 stressful pregnancies and started my own business. Lots of stressZV)$p 3 operationse0Somewhat Successfule0 Unsuccessfule0Z ++pe0Z --pe0Z //pe0Z31p SuccessfulThe silicone injections changed and damaged some of my features and the operations made me look better. The fat from the injections dissolved within 6 months. I am very lucky. Makeup covers up most of my faults. My PRS seems to be very mild compared to ot?Z;:p??Z ??p@ZTIApe0e0e0e0e0e0Milde0e0Zq\@ CaucasionZ!qTV News producere0Zqe0e0e0e0e0e0e0e0e0e0e0e0e0e0Zqe0e0After my first reconstructive surgery my jaw started to crack when I opened it too wide but is it better now. I only get lock jaw during times of stress.I have patches of numbness all over my body--predominantly on the right side but a few little spots on the left side. I have one large chunck of numbness on my upper right thigh. In the areas of numbness, no body hair grows.e0%I believed it stopped around 23 or 24e0ZR"qe0,it rapidly sped up 18-22yrs and then stoppede0e0I can't be sure, but I partied a lot in college and that's when the atrophy really began to become pronounced. I lost about 30 lbs and drank college levels (that's a lot) of alcohol. Some how I think that the alcohol and lack of sleep contributed to poor Z2'$q3e0Somewhat Successfule0ZM-)qe0Somewhat Successfule0Somewhat Successfule0Z //qe0Z 33q@Z 77q@Z;9q???Z ==q?ZXIAqe0e0e0e0e0e0Moderatee0e0Z4r]@#swedish, scottish, egyptian, frenchZQr6research coordinator, dietitian, exercise physiologiste0ANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0in the winter only, cold handse0e0Cused to spasm and stay locked, would have to wait and then pry openZ re0Z re0Z re0Z! re0e0Zp'#r:i don't think it ever stopped with me, just keeps going on1e0Somewhat Successfule0Z ))re0Z ++re0Z --re0Z //re0Zj32rYinitially the fat graft worked well but since the disease continued it ate up all the fat?Z 55r@Z87r@?Z1?;r????@ZVIAre0e0e0e0e0e0Severee0e0Zs@]@ Irish/ GermanZsstudente0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zse0e0Z'se0 6-7 years olde0Z se0Z" se0e0The Romberg's stopped or seemed to stop for about 5 years. But we are not sure beacause it is a very mild case and very slow moving. just before it restarted my daughter hit her chin a couple times by falling. She is a dancer.Z %%se0Z ''se0Z ))se0Z ++se0Z --se0Z //se0Z 55s?Z ;;s?ZYIAse0e0e0e0e0e0 Very Milde0e0Z t]@Z te0Zte0e0e0e0e0e0e0e0e0e0e0e0e0e0Zte0e0Z te0Z te0Z te0Z! te0e0Z %%te0Z ''te0Z ))te0Z ++te0Z --te0Z //te0Z:FAte0e0e0e0e0e0ZIHte0e0Z u]@Z ue0Zue0e0e0e0e0e0e0e0e0e0e0e0e0e0Zue0e0Z ue0Z ue0Z ue0Z! ue0e0Z %%ue0Z ''ue0Z ))ubZ ++ue0Z --ue0Z //ue0Z:FAue0e0e0e0e0e0ZIHue0e0Zv^@whiteZ0vcertifed nursing assistante0AZve0e0e0e0e0e0e0e0e0e0e0e0e0e0%My hands get blotchy when there cold.e0e0Zve011e0Z ve0Z! ve0e0Z%$v6e0Z ''ve0Z ))ve0Z$-+ve0 Successfule0ZJ1/ve0)I've had a silicone implant under my eye. UnsuccessfulZ 33v?Z 55v?Z 77v@Z 99v?Z ;;v?Z ??v?ZVIAve0e0e0e0e0e0Severee0e0Z&w@^@australia and englishZ we0Zwe0e0e0e0e0e0e0e0e0e0e0e0e0e0Zwe0e0ZwCoeliac diseasee04e0gTreatment seems to have halted most of kiaras atrophy but as she is growing it is hard to tell how muche0Z! we0e0Z%$w1e0Z ''we0Z ))we0Z ++we0Z --we0Z //we0Z 33w?Z 66w?Z ::w?ZVIAwe0e0e0e0e0e0Severee0e0Zx^@ SlovenianZdx housewifee0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Hands and feet very colde0e0*Cant open wide extrodinary pain in the jaw!Right breast as mentioned earliere030e0Electronic treatmentse0Z*" xe0e0second pregnancyZ)'$x3e0 Successfule0Z ))xe0Z ++xe0Z --xe0Z+1/xe0 tissue graft SuccessfulZ 33x?Z 77x@Z=??ZVIAe0e0e0e0e0e0Severee0e0Z@`@ MIXED RACEZNURSERY HELPERe0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0LHANDS ALWAYS FEEL COLD I AM NOT SURE OF BLOOD GROUP I THINK IT IS B POSITIVEe0e0ZePALPITATIONS, IRREGULAR HEARTBEAT, DEPPRESSION, CATTERACT, MIGRANE, BACK PROBLEMS ON RIGHT HAND SIDE,e0 14 -15YRSe0Z0!e0 4YRS TO 10YRSe0e0Z%$3e0Z ''e0Z ))e0Z ++e0Z --e0Z>/e0TISSUE EXPANDER TO EXPAND HEAD TISSUE ON BALD PATCH TO ALLOW TISSUE TO BE TIGHTENED MAKING BALD PATCH LESS NOTICEABLE. OPERATION FOR TISSUE TO BE INPLANTED UNDER BROW ON FOREHEAD FAILED CAUSING INFECTION, OPERATION PERFOMED TO REMOVE INPLANTED TISSUE UnsuccessfulXI HAVE LOOKED AT THE PICTURES BELOW, PICTURE 1 AND PICTURE 2 IS MYSELF AT A YOUNGER AGE.@?@?@?@@@@@@Z_I@@@@@@@@Severe@@Z``@whiteZhouse wife/mothere0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZHe0e0:not exactly lock jaw, put yes i can't fully open my mouth.I just found out that i have an iregalure heart beat. And i have endometriosis that justgot trated for. i am currently seeing a maxiofacial sugeon and a plastic sugeon. And i am about to be seeing a ganetics doctore.e020e0Z e0Z# e0e0My daughters birth at age 20 was very trama tizzing i had to have an emergeciy cesection, this past year i had another sugery at i noticed again more deteriationI was put on depo lupron shots for my endometriosis this year after my sugery. this stuff also got me to have fluttering heart problems. the reason wy i had to have an emergency cesection when i had my daughter was because a nurse gave me someone elses meZ %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0ZI3@?@?@?@@?@@@????????Moderate??Z`@latinZstufdente0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Ze09e0Z bZ! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z 33?Z::5@@@@??Z ==@Z ???Z[IAe0e0e0e0e0e0 Very Severee0e0Z9`@(English Canadian - Irish/Scotish/EnglishZLab Assisstante0OPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z%$1e0Z ''e0Z ))e0Z ++e0Z --e0Z@1/e0Rhionoplasty (spelling?)Somewhat SuccessfulZ43@?Z 77?Z:>9??????ZTIAe0e0e0e0e0e0Milde0e0Z`@WhiteZ Homemakere0AZe0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z#e0 around 36e0Z%!e020e0e0Zn%#Okay I have always had a thin face but not to the point where it took everyone's attention when I went out in public but when I got pregnant it started thinning more instead of gaining weight in my face I lost it dramatically and from there it gradually bZI am just now starting that journey, scheduled for fat injections soon, will let you know.e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z42I have had no surgical procedures. I am consulting with my third doctor(cosmetic surgeon) on Monday, fat injections have been recommended at this stage.@@Z;9@?@Z?=@@?ZVIAe0e0e0e0e0e0Severee0e0Z `@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z!a@AFRICAN-AMERICANZREGISTERED NURSEe0APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z4e0e0I'VE GONE TO DENTISTS OVER THE YEARS TO HELP WITH THE SEVERE PAIN THAT WOULD SEEM TO BE DENTAL PAIN. IT BEGAN IN MY EARLY 20'S AT THE SAME TIME THAT I NOTICED THE DIMPLE IN MY CHEEK. MY PAIN WAS SO GREAT THAT I BLACKED OUT AND CAME TO ABOUT 5-7 MINUTES LAWHEN I AM SICK(FLU,FEVER,SORE THROAT,ETC.) I FAINT. BEEN HAVING UNEXPLAINED BLACKOUTS SINCE I WAS A TEENAGER, 13 OR SO. I HAVE BLACKED OUT EVEN WHEN I WASN'T SICK. SOME DOC'S IN THE PAST HAVE SAID THAT I AM BORDERLINE "ANEMIC" BUT NOT ENOUGH TO CAUSE ME Te028e0Z%!e026e0e0Z2'$1e0Somewhat Successfule0Z ))e0Z ++e0Z --e0Z //e0Z42AFTER 3 INTERVIEWS WITH 3 PLASTIC SURG. ONLY 1 SUGGESTED A FAT TRANSPLANT. I HAD IT DONE LAST DECEMBER. I REABSORBED A LOT OF MY FAT. MADE ME VERY SAD BUT MY FACE LOOKS BETTER THAN IT DID. NO ONE EVER MENTIONED ROMBERGS DISORDER. FOUND IT BY ACCIDENT. VER??Z:8???Z>=?@ZXIAe0e0e0e0e0e0Moderatee0e0Z  a@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z@a@ AustralianZ! OHS Managere0BZe0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Over the years I do not seem to be able to open my mouth as wide as I used to. For example, I can only take small bites of fruit and cannot eat anything cold.Z e0Ze0I think the changes to my lifestyle, diet, less stress have assisted in my well being and I do not suffer from headaches as much. However the tissue wasting is still happening, but has slowed over the last 15 years and is now very slight deterioratione0Z! e0e0Z+'$2e0 Unsuccessfule0Z-+)e0Somewhat Successfule0Z --e0Z //e0Z11Somewhat SuccessfulZ 33?Z 55?Z ;;?Z ==?Z ???ZXIAe0e0e0e0e0e0Moderatee0e0Z `a@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z a@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z a@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z a@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z a@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z b@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z  b@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0ZbbZ e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z @b@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z `b@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z b@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z b@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z b@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z b@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z c@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z  c@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z @c@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z `c@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z c@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z c@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z c@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z c@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //bZ:FAe0e0e0e0e0e0ZIHe0e0Z d@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z  d@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z @d@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z `d@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z d@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z d@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z d@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z d@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z e@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z  e@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z @e@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z `e@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z e@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z e@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z e@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z e@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z f@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z bZ e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z  f@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z @f@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z `f@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z f@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z f@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z f@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z f@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z g@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z  g@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z @g@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z `g@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z g@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z g@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z g@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z g@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z h@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z  h@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z @h@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAbbbbbbZIHe0e0Z `h@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z h@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z h@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z h@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z h@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Z i@Z e0Ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0e0Z e0Z e0Z e0Z! e0e0Z %%e0Z ''e0Z ))e0Z ++e0Z --e0Z //e0Z:FAe0e0e0e0e0e0ZIHe0e0Y;ZPut on email nag listExclude Part 2ID HAD completeKnows blood groupLock JawName Ethnic originZ+O  Occupation Blood GroupRhesusLupus SclerodermaRARaynaudsMSIBDThyroid Ank SpondEye inflammationAsthmaCFS DepressionVitiligo Cold Handsinfo about cold handsProblems with JawInfo about JawOther Medical ProblemsEver stopped or slowed downHow old when stoppedAnything make it slow down?More about stopping factorsEver speeded upHow old when speededPregnant when speedingAnything make it speed upClassificationMore about speeding factorsOther speed slow things Number opsFat Fat outcomeSiliconeSilicone outcomeFlap Flap outcomeBone Bone outcome TrigeminalTrigemina outcomeOther OTHER OP CODE Other details Other outcome Other surgeryHAD1HAD2HAD3HAD4HAD5HAD6HAD7HAD8HAD9HAD10HAD11HAD12HAD13HAD14Line? Corner of EyeMiddle of Eyebrow Near middle Jaw / Cheek Chin indentSeverity Anxiety ScoreDepression ScoreZV6@6@6@6@ Eileen BurnsscottishZ self-employed part timeZS e0e0e0e0e0e0e0e0e0e0e0e0e0e0Not as bad now but had terrible problems with feet and hands from a teenager. Colour in hands didnt change but were often very cold then very hot at other times. Feet would change colour also legs seem to have terrible circulation at times, particularly we0|PROBLEMS WITH CLICKING ETC HAD PROBLEMS RECTIFIED A FEW TIMES WITH I THINK IT WAS AN OSTEOPATH AND CRANIAL SACRAL THERAPIST.Had quite a few episodes during ME where whole body would go numb a heavy weight like a sort of paralysis. Had an inclident when I was on antibiotics seem to go into a sort of hallucination, my sister and mother found me on floor with my chin and arm slige0,It seem to stop when I was a child about 10.e0Z,("e0'Unsure but no obvious dramatic changes.e0e0STRESSJThe problems regarding eye etc did appear after chroonic fatigue syndrome.When I am ill people say visually it is more noticeable although visually people generally dont notice as I have very slight atrophy .Z **e0Z ,,e0Z ..e0Z 00e0Z 22e0Z 44e0Z876Problems with front teethSomewhat SuccessfulZO9?@????@ Very Mild@@ZU7@7@7@7@ Mandy PerroAmericanZ  wife/motherAZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0I do not have Lupus, but my mother does have a form of it. (she doesn't have the butterfly rash) I do not have rhuematoid arthritis ( although my mother's side of the family has a very strong history); I do have osteoarthritis in my hips ( I was born withe0Had TMJ; has orthoganathic (?) surgery to pull out the upper jaw ( alot ) & lower jaw. I have 'the smallest adult mouth" that most dentist & anesthiologists have ever seen. I have a very small opening when I open my mouth the most that I can.I have a history of mastoid disease on left side (PRS side) & profound hearing loss on that side as well. Have migraines--seem to be centered in left temple mostly. I was born at 7 months gestation, weighing 2.5 pounds. Having vision problems in my left ee0Z' e0Awhen I had the jaw surgery in my 20s, that seem to exacerbate it.e0 see abovee0e0SURGERYsurgeryZ6,)@@Somewhat Successful@Z ..e0Z-20e0Somewhat Successfule0Z74e0Non-bonebone grafted from my scalp to left eye orbit. When they attempted to implant a non-bone cheek bone, my body rejected it & they had to remove it. I was also left with a dark dimple underneath the eye. UnsuccessfulZO9??????????@???????Mild@@Z_8@8@8@8@Tammy Loretta FlemingScottishZ  Teachers aideZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0Z Eyesight and hearing is fading on the affected side of face. Inner ear infections have become a problem in the past few years, once again only on the affected side.e08e0Zd'"e025e0e0STRESS1STRESS,(not enough sleep, emotional upheval,ect.)Z6,)$@$@Somewhat Successful$@Z ..bZ 00e0Z 22e0Z74e0CollagenIn the late 70's early 80's I had many collagine injections. these were useless as the collagine would disappear in about 3 days. UnsuccessfulZO9?@@?@?@@Severe&@@Z{9@9@9@9@Erik R. Copeland)White (English, Irish, Scottish heritage)Z studentAZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0Z e015?e0Z ""e0Z%$e0e0Z **e0Z ,,e0Z ..e0Z 00e0Z 22e0Z 44bZO9?@???Mild@ZZ:@:@:@:@Pip Rutherford AustralianZ  Sales RepANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Especially during the winter months (some mornings get to -4 degrees) my hands will be like blocks of ice and the rest of my body beautifully warm. My right hand can be colder than the left at times. For instance, today is a very mild to warm day and my re0Z. I ticked "yes" for Ankylosing Spondylitis. I think I mentioned to you before about my back problems and operation. I had spondylolisthesis which resulted in a fusion and instrumentation at the L5-S1 and a laminectomy. So I do not know whether they are onee0In my early teense0Z ""e0Z%$e0e0Z-,)@@ Successful@Z ..e0Z 00e0Z 22e0Z 44e0ZO6Fat was taken from my stomach and implanted in my right cheek area (just like stuffing a chook!!) Extra fat was implanted because over a period of about 12 months it subsided. The operation was an experiment (29 years ago)because the doctor did not know h SuccessfulI came beack to this spot after seeing the pictures. I have shrinkage of my right thigh with thinning of the fatty tissue. This was originally diagnosed as scleroderma after a biopsy was done. So my question is "Is there a connection with scleroderma and ??Moderate??ZW;@;@;@;@ Julie BassettEuropeanZ" %Human Resource/Training & DevelopmentOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0I have suffered from Asthma since I was 5 after having whooping cough and pneumonia (I hope that spelling is right). It isn't severe though.e0QI do have times when I get some joint pain on my affected side but not too often.Gallbladder problems (Gallbladder removed 5 years ago) Back trouble (L5 disc disease) I also have odd teeth - on the related side, I have a molar which has one prong instead of four although one dentist says he thinks it is actually my wisdom tooth as I de0About 19e0It's hard to tell but I did try a homeopathy treatment and large doses of vitamin B (injections once a week for 6 weeks, I'm not sure on the amount but could find out if you're interested)e0Z%$e0e0Z-,)?? Successful?Z ..bZ 00e0Z 22e0Z 44e0ZO9MildZY<@<@<@<@ Mitchell Hyde australianZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0Djaw has gone out of shape. teeth don't close properly on right side.right eye has sunken back a bit and dose'nt close properly somtimes ,when he is asleep. having trouble with his mouth. dribbleing uncontrolable. xome trouble drinking from cup.e0Zd% e0%after treatment, already talked aboute0four and a halfe0e0Z&((we sent info with first surveyZ **e0Z ,,e0Z ..e0Z 00e0Z 22e0Z 44e0ZO9@@?@@????????Mild&@@Zf=@=@=@=@Maecil Maris HiltonAmerican-- GermanZ retired-was bank officerZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0Z e0Z e0Z ""e0Z%$e0e0Zh0)@@ Unsuccessful@Somewhat Successful@ Unsuccessful@Z 22e0Z 44e0Z;76Silicone implant on foreheadSomewhat SuccessfulZO9??@?@@@??@????????Severe$@ @ZW   >@>@>@>@ Lucian Smith caucasianZ militaryABNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0&My hands tend to get cold very easily.e0Z  My blood type is AB-, but I could not select this above. I do have a problem with my left eye becoming dry because my eyelids do not completely close.e022e0Z "" e0Z%$ bbZ*( sMy rombergs seems more pronounced in direct correlation with the amount of sleep I get. Less sleep, more pronounced@@Z ,, e0Z-0. e0Somewhat Successfule0Z 22 e0Z 44 e0ZO9 @?@???Moderate@?Zh   ?@?@?@?@Jenifer Reaveley GleedCanadian , WhiteZ StudentBNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z  e0Z" Healthy No other problemse011e0ANot sure If the medications are the reason or not. Methaltrexate.e0Z%$ e0e0Z ** e0Z ,, e0Z .. e0Z 00 e0Z 22 e0Z 44 bZO9 ???Mild@Zz   @@@@@@@@Kimberley McMichael%Caucasian- (German, Swedish, English)Z Speech Language PathologistAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z  e0Z( a gestational autoimmune disease- antiphospholipid antibodies during pregnancy The antibodies effect the blood's clotting factor causing it to clot more quickly which results in the babies low birth weight and possible miscarriages and blood clots in the e0 16 and 30e0decrease in stress, and active exercise, It began at 15 when I hit puberty. After my body adjusted to the new hormones the disease seemed to stop a year later. During the first year of the disease I lost tissue under my eye with hyperpigmentation, but no e0age 25 and also age 29e0e0STRESSzpreganancy-possibly related to hormones again and stress, lack of exercise and poor diet all seems to cause it to speed upI feel that regular exercise and stress reducing exercise like yoga have a significant impact on improving circulation and increasing immunity and causing the disease to slow down. Also.... I feel that improving my diet by limiting animal meats and producZ ** e0Z ,, e0Z .. e0Z 00 e0Z 22 e0Z64 e0AllodermI am scheduled to have alloderm insertion. Alloderm is an inert sterilized skin in which the cells have been removed to avoid a reaction. Alloderm is now being used instead of silicone. My surgeon feels that fat injections which he used in the past were nZRO8 |I will send you an email about the success of my surgury in November as it takes about 2 months for the swelling to go down.????Mild@?Z]   @@@@@@@@Michelle MacLellan CaucasianZ Insurance SalespersonZ Negativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z  e0Z-  bApprox 22 years oldbZ "" e0Z%$ e0e0Z6,) @@Somewhat Successful@Z$0. e0 Successfule0Z 22 e0Z 44 e0ZBO6 I have had a muscle flap implant in my cheek. The muscle was harvested from my right leg. It is also the right side of my cheek in which has atrophied. I also had a small dent in my forehead. She used a artificial implant for this area. The operation took SuccessfulWNOTE: My 2nd Cousin has been diagnosed with Scleroderma and my mother has Fibermyalgia.?@@??@???????Moderate @@Zz   A@A@A@A@Meagan Elizabeth Lee$White, Irish/French/English HeritageZ noneZ/ Negativee0e0e0e0e0e0e0e0e0e0e0e0e0e0(written by Meagans' mom, Ellen) Meagan has trouble with her extremities, poor circulation? Her fingers/hands get chilled easily and turn very whitee0Z  Epilepsy, currently under treatment with Neurontin. Left side impairment(lack of right brain function), facial atrophy, dental work done (braces & retainer) to correct teeth alignment. Headaches (migrane-type), counseling for depression. Trial of medicatie017e0Zi'" e09e0e0PUBERTY6rapid growth (age appropriate) onset of periods maybe.Z*) ??Z ,, e0Z .. e0Z 00 e0Z 22 e0Z 44 bZ76 Meagan had a heel-cord lengthening (left leg) to improve her gait and make her be able to walk better (her foot more flat to the ground) she was becoming rapidly unable to run and limped badly. We tried a brace for over a year to stretch out her leg.Somewhat SuccessfulZO9 @?@?@??@@@@Moderate.@"@ZbA@A@A@A@Kathleen GoodspeedWhite/AmericanZ %Vocational Counselor/Graduate StudentBPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z%e0lMy jaw sometimes remains open and is exceedingly painful and I need to physically shut my mouth with my handHeadaches, severe body aches and exhaustion - which usually occurs with the headaches in the fall. Okay this is a wierd one. After my last surgery which was 15 months ago I broke out into a severe outbreak in my genitials. They thought it was Herpes but Ie0off and on and then progressese0Hard to tell - I just went to the doctor and he said that my cartlidge in my nose is being reabsorbed. It appears to progress in the fall and stop in the late wintere0#22 after I had my son it went crazye0e0Z''My disease had stopped at the coup de sabre and when I became pregnant or after I delivered I lost the whole side of my face relatively quicklyZ*)$@$@Z ,,e0Z$0.e0 Successfule0Z 22e0Z74e0Tissue ExpanderTissue expander - unsuccessful- infection - many revisions as the disease continues to progress. Much to do with my nose. Also a lip flap. UnsuccessfulZO9???@Severe@Z[B@B@B@B@ Adele LiuItalian/AmericanZ TeacherZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0AMy hands are usually cold and sometimes have a tingling sensatione0Z# e0 late 30'se0Z ""e0Z-($e0e0STRESSStressTruthfully, I have no idea what provokes the continuing atrophy. My CT scan revealed that even my sinuses have atrophied. And I feel the atrophy is continuing. In part, that my be a factor in why a reconstructive surgeon will not perform corrective surgerZ **e0Z ,,bZ ..e0Z 00e0Z 22e0Z 44e0ZO9@???@???@??Severe$@@Z_B@B@B@B@Jennifer van Gemert AustralianZE 8Student at present/Graduate Diploma of Primary EducationAZ  e0e0e0e0e0e0e0e0e0e0e0e0e0e0I suffered from post operative depression on several occasions and clinical depression at other times. In regard to Asthma; this was instigated when I suffered with severe Pneumonia in 1992.e0nThis occurs randomly and without warning although it is worse when it is cold. It is not a frequent occurance.1986 Herpes Simplex (orally)requiring hospitalisation 1990 Ingrown toenail operation (infection) requiring hospitalisation 1992 Wisdom teeth removal requiring overnight hospitalisation 1997 Glandular fever with associated hepatitis requiring hospitalisatie0313 and then started again at 15 stopped again at 17e0Z%%"e015e0e0Zw''oI do believe that weight gain or loss (gain in my case) makes a big difference to the appearance of the atrophyZ6,)@@Somewhat Successful@Z ..e0Z$20e0 Successfule0Z 44e0ZO9??@?@?Moderate@?Z&C@C@C@C@ Yvonne McLaneCaucasian - American IndianHalf American IndianReal Estate SalesANegativeC@C@C@C@C@C@C@C@C@C@C@C@C@C@Zd%e0I have had to recently be treated for my left jaw locking. I first went to my primary care physician and he could not do anything for me so I was treated by a Chiropracter. He unlocked my jaw and relieved the pain.This begins when I was 14 - had surgery at 16 for scleroderma en coup de sabre. A period of approximately 5 year of seizures in my 30's - hystrorectomy for hardened uterus when I was 37 - scarring of my cornea - and arthritis in several joints.e019e0HMassive injections of B-12 directly into affected area - scalp, foreheade016e0e0ZG*(-I take only daily doses of vitamins and herbs@@Z ,,e0Z ..e0Z 00e0Z 22bZ2O4e0Excision of coup de sabreremoval of scleroidal section of scalp on left side - 14 yrs old removal of hardened appendix - 35 years old removal of hardened uterus - 37 years old SuccessfulThis has been an ongoing struggle all my life. Believed to be triggered by severe trauma to area of head where scleraderma first appeared.????@Moderate@@Z[C@C@C@C@Karen E.A. Smith caucasianZ' behaviour management specialistZ Positivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z`e0pain in the left side of my jaw and it has tempoararily locked on occassion .. nothing severe or long - lasting ... just enough to cause concern then disappear again!suspect: bullous lung disease last winter ... saw a specialist who determined that there was little to be concerned about... did not confirm that diagnosis.e0Z e0Z ""e0Z%$e0e0Z **e0Z ,,e0Z ..e0Z 00e0Z 22e0Z 44e0ZO9?@?@@@@?@?@@????????Mild&@&@ZRD@D@D@D@ Lory BriccoWhiteZ Registeres NurseONegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0My jaw does "lock up" briefly from time to time - also, I tend to "gring" my back teeth - not while asleep, but I while I'm awake.Z*e0approx 33-35 years of agee06Plaquenil therapy appeared to slow progression of sx'se0currently (43years old)e0e0DRUGSLI'm no longer taking plaquenil - I suspect this is why the sx's have sped up none known??Z ,,e0Z ..e0Z 00e0Z 22e0Z.74e0EYEThe doctor did surgery on my "good eye" (right)to make it appear more symmetrical to my affected eye (right) - It did make my eyes more symmetrical, but now my right eye appears to be receding again and my eyes are about as asymmetrical now as they were bSomewhat SuccessfulZO9???? Very Mild@?ZKD@D@D@D@ Kathryn LargeZ5 -Administrative Assistant Construction CompanyZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0Z+ e0started 4 ended 4e0Z ""e0Z%$e0e0Z*)@@ZM0,e0Somewhat Successfule0Somewhat Successfule0Z 22e0Z 44e0Z76silicone implant for cheekbone - also had surgeries to remove excess tissue. Was always around 100 lbs. Now am 120 so face put on weight and sagged - bummer. Need facelift or removal - going to get second opinion - surgeon concerned about nerve damage wit SuccessfulZO9 Very SevereZOE@E@E@E@Cal. MayWhiteZ automotive painterZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0Z e0Z e0Z ""e0Z%$e0e0Z/,)?? Unsuccessful?Z&0.e0 Unsuccessfule0Z 22e0Z 44e0ZO9???Moderate@?ZdE@E@E@E@Mary Diane Sprayberry united StatesZ  housewifeZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0\I have always had cood hads-I have carpul tunel and sonetimes my hands turn blu-black color.e0Zmy left side(face-leg-foot-arm and hand has gone numb and my right foot also. no medical reason yhat the dr's can findi have high blood pressure-controled with medicatione0Z e0Z ""e0Z%$e0e0Z"''After birth of first childZ **e0Z ,,e0Z ..e0Z 00e0Z 22e0Z 44e0ZO9??@@@?@@Moderate"@@ZWF@F@F@F@ Marie Winget CaucasianZ ,house wife / "Hallmark" card clerk part timeOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0Z e0Z e0Z ""e0Z%$e0e0Z6,)$@$@Somewhat Successful$@ZM2.e0Somewhat Successfule0Somewhat Successfule0Z 44e0ZO9?@??@???@Severe@@Z\F@F@F@F@ Sandra ShawIrish caucasianZ Medical Laboratory technicianONegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Ze0qI would rate it as moderate. My jaws crack every time I open my mouth but it's because my jaws are an uneven sizeZ1 e0Possibly ~ 18 years olde0Z/%"e0 14 years olde0e0ZH''@Probably just a growing spurt, that may have emphasised it more.Z/,)@@ Unsuccessful@Z&0.b UnsuccessfulbZ 22e0Z 44e0Z88One of the reasons I was given for the lack of success by the surgeon was that the site where they took the flap/graft from (on my back, same side as the affected side of my face)seemed to have smaller than expected blood vessels. Near this site I also haZFMGe0e0e0e0e0e0ModerateZVG@G@G@G@ Jayne MessiasEnglishZ Registered NurseOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0Z e0Z" e0Mild atrophy to left cheek, no further sign since derma fat graft but new atrophy has begun in my hairline over last year ( just above my coupe de sabre )e0Z%$e0e0Z-,)@@ Successful@Z ..e0Z 00e0Z 22e0Z 44e0Z@O8ederma fat graft, donor site lower abdo, fat injections post to tidy up a few depressions around graft?????????? Very Mild@?Z[G@G@G@G@Jennifer L Reese caucasianZ  HomemakerOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZGe06My jaw will lock up when eating, talking, and yawning.Z e0Z4% e023e017e0e0Z*(It seemed to speed up in my late teens and then slowed down in my early twenties. We can't really associate anything specific causing the rate of proggresion to speed up or slow down??Z ,,e0Z-0.e0Somewhat Successfule0Z 22e0Z 44e0ZO8I had the surgery as a temporary solution when I was 13 years old. They suggested that I wait until adulthood before having a more permanent procedure. At 21 I found a group of docters in my area to perform reconstructive surgery, however my insurance den??@?@??@?@@?????????Severe$@"@Z^H@H@H@H@Angela Mary SherningEuropeanZ local mushroom farmZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0colder than most - bothe0Jaw locks when yawningZ e0Z e0Z%%"e035e0e0Z ''noZ/,)4@4@ Unsuccessful4@Z$0.b SuccessfulbZ 22e0Z`74e0EYE:Eye operation - brought eye out enough to stop it watering SuccessfulZO9?????@?Severe@@ZaH@H@H@H@Patrick Ward Hindman English andZ Teacher and writerZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0I have always had problems with the cold and my fingers. It takes a small amount of cold to produce painful digits. Along with this extreme discomfort comes swelling of the fingers and the loss of color. As they warm they may tingle and become red but stie0ZWhat as list! I have non symtematic asthma which is a chronic condition. Also chronic is levo scoliosis with rotation of the vertebrae, mostly in the lumbar spine. My deceased mother was afflicted with rheumatoid arthritis. I have a history of arthritis, e0Z e0Z ""e0Z%$e0e0Z''It seems to me the atrophy on the right side of my face did not happen at the same time the coup de sabre occurred. I think the facial atrophy, while much slower, happened about 15 years prior to the appearance of the coup de sabre. NOTE: Not being perfecZ **e0Z ,,e0Z ..e0Z 00e0Z 22e0Z 44e0ZO9@?@?@?@@?@@@?@@@@@@@Moderate.@*@ZgI@I@I@I@ Ines Brahami don't like this questionZf studentAPose0e0e0e0e0e0e0e0e0e0e0e0e0e0it's incredible that you mention this: in fact: i've always sufferd from very very cold hands and the nails turn into a blue color: and people always retire their hands when they shake mijne!!e0Z e015e0Z ""e0Z%$e0e0Z6,)@@Somewhat Successful@Z ..e0Z 00e0Z 22e0Z74e0EXCISONthe doctors hed sliced a piece of my chin to make it seem more symmetrical and then in an other operation they've injected fat: but the results are not very concluding, and also i have to have another operation to reinject fat.Somewhat SuccessfulZO9@?@@?Moderate@@Z\I@I@I@I@Sylvie Adele HalseyEnglishZ  School girlOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0(My mother suffers from Raynaud's diseasee0ZnDaunes syndrome (hope the spelling is correct) Constant runny nose as an infant leading to removal of adenoidse0Z e0Z ""e0Z%$e0e0Z6,)??Somewhat_successful?Z ..e0Z 00e0Z 22e0Z 44bZO9????@Mild@?ZrJ@J@J@J@Andrea Bodenberg German/French/Pennsylvania DutchZ  Event PlannerANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Qusually my hands and feet are colder than anyone elses. especially in the summer.e0jaw was too small for my teeth. had to have braces because of buck teeth and many teeth pulled because my jaw was too small for all my teeth. even had my lower wisdom teeth out at the age of seven.Z"e0fourteene0{the doctor that i have been seeing said that the disease's course usually runs about ten years. mine, however, took twelve.e0Z%$e0e0Z6,)@@Somewhat Successful@Z ..e0Z$20e0 Successfule0Z74e0JAW BONWnthe second surgery was to shave down my jaw bone (actually my rib) because it hadn't rounded off within a year SuccessfulZO9?@??????Mild@@Zo   K@K@K@K@Nicholas RossyLebaneseLebaneseStudentZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z  e0Z  Just to let you know, I am filling this in for my 14 year old son, Nicholas. He was fortunate in that the coup de sabre seemed to stop on its own. He is undergoing treatment to repair the damage thru a series of fat injections, and with a cream to remove e010e0Z "" e0Z%$ e0e0Z6,) @@Somewhat Successful@Z .. e0Z 00 e0Z 22 e0Z 44 e0Z|O8 Depending on this last injection, the doctor may remove some additional fat and inject more, as he is not convinced artificial injections will be more successfu. Very MildZS!!!K@K@K@K@ Ann DundonBRITISHZ !ADMINISTRATOR/SALESAZ  !e0e0e0e0e0e0e0e0e0e0e0e0e0e0YEARS AGO I NOTICED MY HANDS WOULD WRINKLE UP LIKE VERY OLD HANDS THEN GO NORMAL WHEN I WAS YOUNGER. MY FINGERS ACHE SOMETIMES AND YES HAVE FELT COLD OFF AND ON EVEN IN THE SUMMER. I HAVE ALSO EXPERIENCE NUMBNESS IN THE HANDSe0I HAVE ALWAYS HAD THE JAW PROBLEM. MY PLASTIC SURGEON HAD SAID THE JAW IS NOT CONNECTED AT ALL. I KNOW IT IS. IT CAN BE VERY PAINFUL AND WORSE WHEN I AM STRESSED OUT. I CLENCH MY TEETH A LOT THIS DOES NOT HELP. THE INSIDE OF MY MOUTH IS DIFFERENT FROM THEEYES, STOMACH, PAINFUL JOINTS, BACK PROBLEMS, HEADACHES, NECK PROBLEMS, DEPRESSION (ALL IN THE MIND OF COURSE, ACCORDING TO THE DOCTORS).e0Z !e0Z-%"!e0 NOT REALLYe0e0Z*(!MY ATROPHY SEEMED TO HAVE STOPPED BEFORE I HAD ANY OPERATIONS. (BEFORE 37 YEARS OF AGE) AFTER THE 3RD OPERATION THE ATROPHY CAME BACK, THIS TIME AROUND THE EYE SOCKET, TEMPLE,MOUTH AND ITS SEEMS LIKE THE SIDE OF MY HEAD AS WELL. I AM NOW 44 AND HAVING WOR@@Z ,,!e0Z-0.!e0Somewhat Successfule0Z 22!e0Z 44!e0ZO8!AFTER HAVING THE OPERATIONS I AM SOMEWHAT MISTIFIED AS TO WHETHER WHAT PAIN IS DUE TO THE PROCEEDURE OR THE ONGOING ATROPHY. I STILL HAVE A LOT OF PAIN IN THE FACE. I DO NOT KNOW IF THE ATROPHY IS ACTUALLY EATING THE MUSCLE IMPLANT UNDERNEATH AS THE AFFEC@?@@??@?@?? Very Severe&@@Z"""L@L@L@L@Deborah Mitchell2Australia - Irish, Welsh, English, French, SpanishZ "Public ServantBPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z1 "e0Quite severe spasms from 12 to 40+ - haven't had one for a while now (I am 46). Mouth used to snap shut with no warning - I often bit the inside of my cheek or tongue - very painful 'knotted muscle' at temple on my affected side - and I couldn't open my mI have small cysts - forearm, palm, and abdomen - about 5 all up. Doctor said they were nothing to worry about. After a recent health check at my work - I was referred to my doctor as my cholesterol was so low it didnt register on the machine. Doctor orgae0About 30e0Z%%""e0Noe0e0Z6,)"@@Somewhat Successful@Z-0."e0Somewhat Successfule0Z 22"e0Z 44"e0ZO9"?@?????Severe@?Z^###L@L@L@L@Missy Thompsonamerican/whiteZ # pharmacistAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z #bZ #The eye on my affected side has been irritated for the last 2 months. I have been to 2 eye doctors and neither has been able to find anything wrong.e0I don't remembere0Z '"#e032e0e0SURGERYI had my first reconstructive surgery on my forehead then became pregnant 3 months later so I am not sure which was the reason for the speed-up. I was also pregnant at 18 but did not notice any change at that time.Z*)#??Z ,,#e0Z ..#e0Z-20#e0Somewhat Successfule0Z 44#e0ZO9#??@?@??@@???Moderate&@@Zg$$$M@M@M@M@Laurene StannersUnited Kingdom originZ $)Intelligence Operator - Canadian MilitaryAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0I'm always cold, more so than just my hands. It has to be nice and hot for me to be comfortable. It is not just that I feel cold, I am cold to the touch. My fingers always go a waxy yellow/white when they are cold.e0Z? $I've never been diagnosed with immflammatory bowel disease as such, but I've had a problem since birth with my bowels. Most of my childhood I had constipation problems so much so that my parents had to physically help me go to the bathroom when I was a che0"I believe it stopped about age 30.e0Z2%"$e0Between 25 - 27e0e0Z''$xIt may have been because of weight training as I lost a lot of body fat at that time, and thus it became more noticeableZ/,)$@@ Unsuccessful@Z ..$e0Z-20$e0Somewhat Successfule0ZO4$e0 ORBITAL PROPSThree orbital props were inserted and then removed as they caused double vision. My left eye is no longer propped up yet I now have double vision. It was extremely unsuccessful, and only caused more problems. Carved off some of left lower jaw bone. It was UnsuccessfulI was suppose to have some ear carilege used to build up the inside of my left nostril so that I could actually get better oxyen intake, but it was never done. After the other disasterous surgery, I've never been keen for another surgeon to touch me.?@?@????@?Severe&@@Z\%%%M@M@M@M@ Jason Subt&Finnish-from mother Syrian-from father Half syrianHRemodel Houses and attending college, in hopes of an architecture degreeAPositiveM@M@M@M@M@M@M@M@M@M@M@M@M@M@Z %e0Z"%e013e0I wasn't taking part in any treatment because at the time there was none known. At least according to the doctors at the Mayo clinic in Houston Texase0Z%$%e0e0Z **%e0Z ,,%e0Z ..%e0Z 00%e0Z 22%e0Z 44%e0ZO9%???Mild@?ZS&&&O@O@O@O@ Nicola WyattWhiteZ & HousewifeANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z &e0Z}%&e0maybe about 16 years olde0&Maybe the contraceptibe combined pill?e026e0e0Z`('&After childbirth possibly when hormones are settling back into routine. When not on the pill. Noticed a dentation in my cheek bone area so went back on pill (and now fingers crossed) seems to have stopped.At times of stress ie bereavement, house move, I experience pain in the areas affected on my l.h side of face. Could this be a trigger?Z **&e0Z ,,&e0Z ..&e0Z 00&e0Z 22&e0Z 44&e0ZO9&@@@?@?Moderate$@@ZZ'''P@P@P@P@ Shawn FoxWhite/CaucasianZ, '$Front Office Assistant/Dental OfficeZ6 'e0e0e0e0e0e0e0e0e0e0e0e0e0e0My hands do get very cold all the time. It seems like if I am sitting for a small period of time, they get that way, they also turn red, or sometimes a yellowish tint.e0Z"'Yes, my loss of hearing in my left ear. The Iritis this past winter kind of made me wonder where I got that from. I had Iritis in my Left eye. I also have a slight asthigmatism in my left eye. Sometimes,my left eye twitches, my right one does not.e0I was about 17 or 18e0My doctor said it should stop when my face stops growing, and I had my surgery when I was 18, it had seemed to have stopped at that pointe0Z%$'e0e0Z-,)'@@ Successful@Z ..'e0Z 00'e0Z 22'e0Z 44'e0Z76'When I was about 11 Years old, I had a surgery on my left ear to repair a perferated ear drum. about 6 months after that surgery, I started loosing my hearing, then I started noticing a change in my facial features, such as the atrophy on my left side. WhSomewhat SuccessfulZO9'@@@??@?Moderate(@?Zd(((@P@@P@@P@@P@Amber Lekay Covinwhite - caucasionZ (being a 4 year old kidANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z (e0Z (e0Z" (e0yI can not tell at this point what Amber's atrophy is doing. I do not see any visible differences than when she was three.e0Z%$(e0e0Z **(e0Z ,,(e0Z ..(e0Z 00(e0Z 22(e0Z 44(e0ZO9(MildZq)))P@P@P@P@ Karen Feutz$1/2 Hungarian, 1/4 Irish, 1/4 GermanZ )Administrative AsstZU" )e0e0e0e0e0e0e0e0e0e0e0e0e0e0When I lived in the Midwestern portion of the U.S., Chicago, I always had cold hands and feet. I live in Arizona now and, at my age of 52, NOTHING is cold. Ha Hae0Sometimes, it seems like the left-side of my face/jaw gets "stuck" i.e. if I yawn or when I chew something hard, it feels like it sticks. But I've never been unable to fully open or close my mouth.I have not been diagnosed but I think I have fibromyalgia. Everyday, my bones and my muscles ache. I have quite a bit of pain in the back of my neck, my wrists, my knees, my elbows; all the joints. I was tested for rheumatoid arthritis several years ago be0 Late teense0,Just seemed to stop as quickly as it startede0Z%$)e0e0Z2()It seems that the onset was at about age 9 and it stopped by age 16 or so. I started having surgery at age 14 so I don't know if that stopped the progress.4@4@ Unsuccessful4@ Successful4@ Unsuccessful4@ Unsuccessful4@Z 44)e0ZO6)Had silicone injections with a silicone implant to take the place of the unsuccessful bone implat for left cheekbone. Silicone implant still in place and good. SuccessfulI had a series of silicone injections in 1982 consisting of between 50 - 100 injections each during 6 separate treatment dates. Initially I was elated at the results. I looked the closest to normal that I ever did. Now, I have a slight concave spot on lef????????Severe@@Z\***Q@Q@Q@Q@ Dianne Lennox New ZealanderZ *NurseONegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0kThey seem colder than most people's, my feet suffer from the same problem. No colour changes have been seene0Z *]I do have diverticulitis. Apart from one acute attack, it has not really caused any problems.e013-14e0Z ""*e0Z%$*e0e0Z ***e0Z ,,*e0Z ..*e0Z 00*e0Z 22*e0Z 44*e0ZO9*???@Moderate@Z +++@Q@@Q@@Q@@Q@ Robert ClarkeBorn England, Parents JamaicanAfrican American$Financial Planner/Investment AdvisorZ +e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z7+e0&I have muscle spasms from time to timeZ +e0Z +e0Z ""+e0Z%$+e0e0Z*)+@@Z ,,+e0ZM2.+e0Somewhat Successfule0Somewhat Successfule0Z 44+e0ZO9+?@?@@@??@Severe@@Z,,,Q@Q@Q@Q@ Susan Niles3Irish, English, German, French, and American IndianZ ,School TeacherZ ,e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z ,e0-Right perforated Temporomandibular Joint discVertigo, two bouts of feeling like I was being pulled to the left while attempting to walk. I was given medication, beta balancer (?) and eventually went away after several weeks.e0Age 11e0Zv*",e0Age 3 and stopped at age 11e0e0 INFECTIONA possibility of having pneumonia prior to the onset of PRS and then moving from St. Louis, Missouri to Miami, Florida at age 3 1/2. A new environmental change.qI lost the sight of my left eye at age 23. Eighteen months after the birth of my daughter. No changes since then.??Z ,,,e0Z ..,e0Z 00,e0Z 22,e0Z~74,e0EYEXStrabismus surgery of the left eye at age 48, 25 years after sight loss of the left eye. SuccessfulZO9,@@@?@@@?Mild.@@Z---R@R@R@R@Donn CammarataJHalf Italian, Irish,English, scottish,Dutch...A tiny bit of American indiaZ -e0e0e0e0e0e0e0e0e0e0e0e0e0e0I have had some bowel problems. Mainly soft stools and I used to have alot of urgent diarhea before changing my eating habits. I had a colonoscopy and the doctor said everything looked fine. As far as the eyes, I have alot of skin problems, mainly in the e0^Only the appearence of my chin now.............it is about a 1/4 inch higher on the left side.Segmental nephritis as a teenager. Tonsilectomy as a child. Inguinal Hernia surgury within the last yr and a half. I fell on the back of my head as a child, suffered a concusione0Z -e0Z ""-e0Z%$-e0e0Z **-e0Z ,,-e0Z ..-e0Z 00-e0Z 22-e0Z 44-e0ZO8-=I was recently diagnosed and have not looked into surgery yet??@?@??????????????Mild @@Z|...@R@@R@@R@@R@Sally VanRaemdonck(Caucasian- Irish, English,French, GermanZ .Legal AssistantZ .e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z .e0Z9 .Joint pain Fatiguee0 Late 20'se0Z "".e0Z%$.e0e0Z **.e0Z ,,.e0Z ...e0Z 00.e0Z 22.e0Z 44.e0ZO9.ModerateZl///R@R@R@R@ Corey Lemoinefrench- Canadian European JewZ /student0Positivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z /e0Z%/e09e0Gpossibly methotrexate injections ??? don't know if it would have anywaye07e0e0Z **/e0Z ,,/e0Z ../e0Z 00/e0Z 22/e0Z 44/e0ZO9/@Severe@ZL000R@R@R@R@DianewhiteZ 0stay at home mom0ZX 0e0e0e0e0e0e0e0e0e0e0e0e0e0e0For years I have noticed that my hands were always cold and would kind of look blue or purplish as well as certain parts of my face and lips when it was cold out. My one friend used to call me a smurf.e0Z 0I have spine scoliosis,my left eye is slightly crossed but can control it(lazy eye) My vision in the left is 20/100 my right is 20/20 ans slightly far sighted. I don't have eyelashes on the bottom of my right eye.e017e0Z ""0e0Z%$0e0e0Z6,)0??Somewhat Successful?Z ..0e0Z 000e0Z 220e0Z 440e0ZO80I had fat injected in my face taken from my stomach. It was fairly successful although only about 15% stayed and the rest was absorbed. I was going to have reconstructive sergury but found out I was pregnant and decided to forget it.I did have collegen in@??@?????@Mild"@@ZR111S@S@S@S@ Jodi QuelleWhiteZ 1Court ReporterZ 1e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z1e0Currently, my jaw is constantly aching. I often open and shut my mouth just to relieve the tightness. As far as "lock jaw", only when I was 16 (1986) did I have an episode of something similar. I had a terribly high fever and was very sick and my jaw justEver since birth, I was constantly ill with tonsillitis and colds, often losing my voice for all of winter. Finally, in 1995, I had my tonsils removed and have been fine since. In 1997, I went to the doctor for numbness in my feet. They had scheduled me fe0Z 1e0Z ""1e0Z%$1e0e0Z*(1Smoking seems to exacerbate the problems and sensations. I quite smoking and may smoke just one occasionally when stressed. I run faithfully and lift weights and do toning exercises with some Yoga and sports. That seems to help a great deal as far as the @@Z ,,1e0Z ..1e0Z 001e0Z 221e0Z 441e0Z661My operations were unrelated to this disease. I just found out about this disease only 22 days ago and did not realize there were even courses of therapy, treatment or surgical procedures available. I have just begun my research regarding this.ZO91?@@???@?Mild&@?Zg222@S@@S@@S@@S@Michel Laetitiafrancaise (europeenne)Z 2 infirmiereAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0@my fingers are becoming white (sometimes red) when its very colde0Z 2e0Z 2e0Zm'"2e030e0e0STRESS:the stress (I was doing examens when it comes on the face)Z **2e0Z ,,2e0Z ..2e0Z 002e0Z 222e0Z 442e0ZO92@@?@???Severe$@@Z333S@S@S@S@Madeleine de Rauville-Raal=White South African (English mother and South African father)Z 3%Advertising / Full time mother of twoONegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z 3e0When my PRS was at its worst (in and around 1987 when I was 20 years of age), I would have muscle spasms/cramps in my jaw. My jaw would lock in a terribly painful muscular spasm (the muscles along the jaw and the whole cheek area would seem to lock/knot i8No - nothing else - otherwise perfectly healthy and welle0!28 (10 years after it had startede0ZO%"3e0,No, but it was at its worst from 1987 - 1990e0e0Z,(3]No - to me it just had to run its natural course. Nothing helped speed it up or slow it down.?? Unsuccessful?Z ..3e0Z 003e0Z 223e0Z+743e0 RESTYLANEIt's not surgical but a procedure (x3) whereby restylane and perlane products have been injected into the affected / depressed area under local anaesthetic. I think this has been good for me as mine is only a soft tissue problem ie bone is fine. We don't  SuccessfulZO93@??@@???@?@Moderate$@@Zd444S@S@S@S@ Kyla MeyerGerman, Turkish, AfricanZ 4studentZO 4e0e0e0e0e0e0e0e0e0e0e0e0e0e0FI am thin and have always been told it is from inefficient circulatione0Fnot exactly but ove the years I am able to open my mouth less and less#anorexia nervosa, sinus infections,e0Z 4e0Z'"4e025e0e0STRESSsI don't know if it's related but the syptoms seemed to speed up during a time of unrelated extreme emotional stressZ **4e0Z ,,4e0Z ..4e0Z 004e0Z 224e0Z 444e0ZO94@?@?@???@ Very Mild"@@ZT555T@T@T@T@ Lorin MarloweWhiteZ 5 minor childBNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z 5e0Z:5)difficulty falling asleep, staying asleepe0Z 5e0Z$%"5e08e0e0Z **5e0Z ,,5e0Z ..5e0Z 005e0Z 225e0Z 445e0ZO95??@@@@@??@??Mild*@"@Z666@T@@T@@T@@T@Adrienne WilsonNew Zealand Maori/PakehaMaoriUniversity studentANegative@T@@T@@T@@T@@T@@T@@T@@T@@T@@T@@T@@T@@T@@T@fIm very sensitive to the cold, my hands sometimes turn white/blue and if i get really cold i feel sick@T@Z 6e015e0Z ""6e0Z%$6e0e0Z **6e0Z ,,6e0Z ..6e0Z 006e0Z 226e0Z 446e0ZO96@?@&@??@???????Moderate@,@ZS777T@T@T@T@ Mary ToledoGermanZ 7 IS-TechnicalZ 7e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z67e0%I do have spasms sometimes in my jaw.Z 7e05-6e0ZD%"7e0!It started very aggressively at 3e0e0Z2)74@4@Somewhat Successful4@ Unsuccessful4@Somewhat Successful4@ Successful4@Z0747e0COSMETICI have had my nose straightened with the use of ear cartilege. Had my lower eyelid thickened a bit with some of the skin from my upper eyelid. Had my upper lip thickened with grafting from the lining of my mouth. I have probably forgotten some of them.Somewhat SuccessfulZO97????? Very Severe@?Z888T@T@T@T@Natasha GeddieQAustrian & Irish (biological father) French & Cherokee Indian (biological mother)Z 84Sr. Litigation Paralegal, musician and music teacherAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZF 8e0As stated in Part I of the survey, a neurologist (Alan Naarden, M.D.) ordered an MRI of my jaw in January, which reflects severe degeneration of the jaw bones which he interprets as a severe case of TMJ. I have been referred to a dentist to see about gettI am being treated for bi-polar manic depression. I have also been treated for marijuana dependence. I was initially diagnosed with severe depression in 1991; I did not know until last summer that feeling like I am on the top of the world with endless enee014 - started then and stoppede0Z%%"8e037e0e0Z6,)8??Somewhat Successful?Z-0.8bSomewhat SuccessfulbZ 228e0Z 448e0ZO78Somewhat SuccessfulRecovery is taking A LOT longer than the surgeon said it would. The surgery did take longer and was more extensive than he originally planned, also. He said he had to 're-do' it after he'd done it the first time, because the flesh wasn't the proper color.??@???@@@???????Mild"@@Z999U@U@U@U@ Hyunjin LeeKoreanKorean researcherAPositiveU@U@U@U@U@U@U@U@U@U@U@U@U@U@Z 9e0Z 9e024e0Z`'"9e026e0e0STRESS-I think.. Fatigue and stress make it speed upZ6,)9??Somewhat Successful?Z ..9e0Z 009e0Z 229e0Z 449e0ZO99??@?@@?????????Severe"@@Za:::@U@@U@@U@@U@Petra R. MedinaSpanish-AmericanZ% :Administrative AssistantBZ :e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z :e0Z :e010?e0Z "":e0Z%$:e0e0Zp'':hI really didn't pay attention to how long it took, how old I was, or whether it stopped or speeded up???Z*):@@Z-.,:e0Somewhat Successfule0Z 00:e0Z 22:e0ZO4:e0FOAMpiece of foam shaped to fit over my right side by my ear and jawline at age 18 in addition to fatty tissue taken from my stomach to fill in around nose and cheek-bone down Unsuccessfuleventually the "piece of foam" has shrunk and broken up and I think is still in by my jaw someplace; it seems to be hanging in the throat area immediately below the jaw kind of in a lump. I guess I just forget it's there and have never thought about havin??@?????Severe @?ZL;;;U@U@U@U@Craig MitchellZ ;Software EngineerZ ;e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z ;e0Z ;e016e0Z "";e0Z%$;e0e0Z6,);@@Somewhat Successful@Z ..;e0Z 00;e0Z 22;e0Z 44;e0Z76;jHad excesive fat after graft (expecting some absorption) and went for a type of lipo to remove excess fat.Somewhat SuccessfulZO9;?????@Moderate@@Z`<<<V@V@V@V@Rose M. GoodmanGermany / IrishZ% <sales - construction industryZ <e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z<e0Sometimes it tightens up so much in the afflicted area that you can see the tension and it hurts!I have to try and stretch it just like a cramp in any other muscle.Z@ <e0&based on photos, it was active 5 yearse0Z ""<e0Z%$<e0e0Z,(<Was a healthy child - first noticed at age 13 and it progressed so slowly that as first the damage was not noticible to my family. Per photos, seemed to have stopped at age 18@@ Successful@Z ..<e0Z 00<e0Z 22<e0Z074<e0LASERSurface laser to smooth out the deep furrows. It did make a difference, however, the part where the muscle still shows (chin closest to the center)is noticible when I move my mouth. In most people this area has "padding" but mine does not so you see the mSomewhat SuccessfulZO9<???Mild@ZV===V@V@V@V@Beth McAllisterwhiteZ =childZ =e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z =e0Z =RPsoriasis (on scalp). That's what we thought caused her bald spot a long time ago.e0#we think it is stopping now - at 10e0Zh%"=e0ELast year at age 9 was a dramatic year of development of this diseasee0e0Z((=Just a growth spurt?Z **=e0Z ,,=e0Z ..=e0Z 00=e0Z 22=e0Z 44=e0ZO9=?????Moderate@?Zb>>>V@V@V@V@D.Garvinscottish,english descentZ > hairstylisAZ >e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z >e0Z%>e028e0qi had a dermis graph inserted into my cheek and chin. i have not noticed anything more and that was 14 years ago.e0Ki had 2 pregnancies between age 23 and 26 which is when it was at its worsee0e0Z''>it could have been the pregnancies or maybe it was the timing of having it for so long and it had just about burned itself out i am not sure.ZH.)>@@ Unsuccessful@ Unsuccessful@Z 00>e0Z 22>e0Z 44>e0Zz76>bi had a silicone prothesis inserted but i had it removed later because it looked and felt strange. UnsuccessfulZO9>???@?Mild@Z[???W@W@W@W@ Mary E. Lydon Mostly IrishZ ?cookOZ] ?e0e0e0e0e0e0e0e0e0e0e0e0e0e0The first time I diagnosed way back in 1976, the plastic surgeon had me see an opthalmologist, he told me that I had debris in my right eye. He gave me steroid drops, never saw him again. When I was 30, 11 years later, I needed to wear glasses, my eye doce0OOccasionally the muscles under my jaw will cramp, it is just a momentary thing.oI had two grand mal seizures when I was 44. I mistakenly called them petit mal on the first part of the survey.e0Z" ?e0hThe atrophy seemed to occur almost overnight when I was 15, it has not changed significantly since then.e0Z%$?e0e0Z*)???Z$.,?e0 Successfule0Z 00?e0Z 22?e0Z 44?e0Z76?I recieved 11cc of liquid silicone in my cheek and chin in 1974. Dr. Joseph Murray of Peter Bent Brigham Hospital in Boston MA (now known as Brigham and Womens Hospital), was participating in a goverment sanctioned test on silicone injections. He was the  SuccessfulZO9??@@???Mild@@Zc@@@@W@@W@@W@@W@Siomara M. LagunaCentral AmericanZ! @Preschool Teacher/StudentZ @e0e0e0e0e0e0e0e0e0e0e0e0e0e0;My hands are always cold. They are never clammy, just cold.e0Z @e0Z% @e0`I had reconstructive surgery, so I am not sure if it ever slowed down because I have an implant.e019e0e0Z6,)@ @ @Somewhat Successful @Z ..@e0Z-20@e0Somewhat Successfule0Z'74@e0EYEI have had cranial reconstruction and around the orbit of the eye. The first surgery was not successful because the orbit made my eye shift and made my eye look worse than before. I have also had to have eyelid surgery because there was too much scar tiss UnsuccessfulZO9@?????@??Severe @?ZAAAW@W@W@W@Serene Oh Hwei FernCHINESEChineseNURSEBPositiveW@W@W@W@W@W@W@W@W@W@W@W@W@W@-HAVE SWEATY PALMS(NOT SEVERE), AND COLD HANDSW@FEEL TIGHTNESS OF THE LEFT JAW. SOMETIMES WHEN I OPEN MY MOUTH, I CAN FEEL THE JAW MOVING UP AND DOWN (MECHANICALLY). COULD NOT OPEN MY MOUTH BUT RELIEVE AFTER TAKING PHENYTOIN AND ANAREXI'm Serene Oh from Singapore. I think I've missed out something which may or may not be relevant. I had a lipoma removed in late 1997. It's located near my right scapular. Guess that's about all. Really hope to hear from you soon.W@Z Ae0Z ""Ae0Z%$Ae0e0Z((AI DON'T SEE THE SPEEDING OR STOPPING, BUT I OBSERVED THAT I'VE INCREASING HEADACHE AND TIGHTNESS OF MY JAW WHEN I'M STRESS, OR EMOTIONALLY CHARGED, OR SMILE/LAUGH EXCESSIVELYZ **Ae0Z ,,Ae0Z ..Ae0Z 00Ae0Z 22Ae0Z 44Ae0ZO9A@????@Mild@@ZUBBBW@W@W@W@ Natalie BruHispanicZ BSales AssociateZ Be0e0e0e0e0e0e0e0e0e0e0e0e0e0Z Be0Z Be0Z Be0Z ""Be0Z%$Be0e0Z/,)B?? Unsuccessful?Z ..Be0Z&20Be0 Unsuccessfule0Z 44Be0Z:O7B UnsuccessfulPThese type of surgery only lasted a couple of months, now my symptoms are worse.@????@??????????Moderate@@ZTCCCX@X@X@X@ Mary Camp CaucasianZ2 C*Stay at home Mother, formally a journalistZ CPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZCe0Sometimes I find it difficult to chew on the left side. This is not due to pain or stiffness but just a general lack of strength/mobility.Z{%Ce013 or 14e0.Onset of menstruation and reaching full growthe0late 20se0e0Z''CI believe pregnancy reactivated the atrophy, but am not absolutely certain of that, because the area affected (chin) had fat grafts in the 1970s and it has also occurred to me that what I am seeing is a deterioration of those grafts and a reverting back tZO.)C@@Somewhat Successful@ Unsuccessful@Z 00Ce0Z 22Ce0Z 44Ce0ZO9C?????Severe@@ZSDDD@X@@X@@X@@X@ Diana MannCockneyZ DGarden DesignerAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z De0Can't open mouth very wideProper Iritis - goes to Moorfield. Depression after parents died (not to do with face). Gallbladder, Hysterectomy, general ill health (seems unrelated)e011e0Z ""De0Z%$De0e0ZP,(DDidn't notice anything9@9@Somewhat Successful9@Z-0.De0Somewhat Successfule0Z 22De0Z 44De0Z66DRight ear stuck out (pinned back). Tried to alter shape of eye in one operation. Arm to face pedicle in 20's. More embarassed by arm and abdominal scars. Rhinoplasty x 3ZO9D??@@?Severe@@ZEEEX@X@X@X@Martha M. Hollingsworth&Irish, Indian, German, Italian mixtureZ Edental hygienistOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0sI don't believe I have color change but frequently I have cold fingers especiallly the fifth fingers on both hands.e0A couple of times in my early twenties I had what was thought to be a TMJ dysfunction. I clinch my teeth now. Also, I appear to have somewhat short root structure of my teeth on radiographs.Z Ee0Z Ee0Z ""Ee0Z%$Ee0e0Z*)E@@ZF0,Ee0 Unsuccessfule0Somewhat Successfule0Z 22Ee0Z 44Ee0ZO9E@???????Mild@@Z_FFFX@X@X@X@Patricia Del Mercado caucasianZ FRegistered NurseAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z}Fe0SLight malocclusionLPolymyositis resulting from an anti-depressant "Serzone" Anxiety. Scoliosis.e0Z Fe0Z ""Fe0Z%$Fe0e0Z6,)F@@Somewhat Successful@Z ..Fe0Z 00Fe0Z 22Fe0ZW74Fe0GORE TEX#gore-tex implant and cheek implantsSomewhat SuccessfulZO9F@?@@@@??@?????????Moderate,@@ZbGGGY@Y@Y@Y@Kathy S. McCormickIrish AmericanZ% GNuclear Medicine TechnologistZ GPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0I tend to be cold all over. I have plenty of "padding" (I'm overweight), but I still seem to always be cold. Occasionally when I get extremely cold extremities, my hands seem to appear whitee0I've had TMJ. On occasions when I yawn, my jaw would lock open. I have since learned to yawn "off center" to avoid having my jaw lock.I have very severe allergies to mold, fungus, dust, smoke, pollen, grass and trees - - - mostly mother nature. I've been treated with oral meds (currently 10mg QD Zyrtec and started taking allergy shot 1 year ago. My allergist, Dr. Gailen Marshall, said he0Z Ge0Z ""Ge0Z%$Ge0e0Z((GIt seems as though I did not develop PRS until I was about 40 to 41 years old. It seems to have progressed (very slowly) since then and since it is slow, I can not tell if the Plaquenil has made any difference.Z **Ge0Z ,,Ge0Z ..Ge0Z 00Ge0Z 22Ge0Z 44Ge0ZO9G?Mild?ZvHHH????Theresa Hildebrand"American of Irish & German descentZ H Library ClerkBPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z He0Z He0Z He0Z%%"He0Noe0e0Z((HJon, this is a tough question because it is hard to tell whether facial changes take place because of the natural aging process or from the atropy advancing.Z **He0Z ,,He0Z ..He0Z 00He0Z 22He0Z 44He0ZO9H@?@???Moderate@?Z`III@@@@Janette NorrisAustralian-WhiteZ IStudentOZ Ie0e0e0e0e0e0e0e0e0e0e0e0e0e0Z Ie0Zb I8Petit mal when I was younger. Also I suffer from excma.e0 16 years olde0Z/%"Ie0 12 years olde0e0Z6,)I??Somewhat Successful?Z ..Ie0Z$20Ie0 Successfule0Z 44Ie0Z-O8ISI had to have artificial bone inserted as my skull was thin in parts due to Romberg@@@@??@????????Moderate(@@ZoJJJ@@@@ Rita Bietry"American born, parents from PolandZ JMedical office nurseBPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Cfingers and toes become cold and numb quite easily when not active.e0The jaw will become lodged in a certain position. This does not happen often but it does happen suddenly. I have learned to just relax myself and my jaw and it will relax the muscles.i suffer from headaches both sinus, tension and migraine. It seems I have a headache of some degree every day. Most of them are treatable with sinus medicine and motrin. Occassionaly the migraine needs Medrin.I also have a sensitivity to flickering lightse0 40 years olde0Z.%"Je0 32years olde0e0Z''JzIt started after my second pregnancy. I noticed a darking spot on my right eye develop before the facial changes occurred.Z6,)J@@Somewhat Successful@Z ..Je0Z 00Je0Z 22Je0Z 44Je0Z66JI had one fat implant operation that was somewhat successful except that the implant 'took' a little off the mark. I have also had two auto fat injections that did not last very long at all. The fat was reabsorbed quite rapidly.ZO9J??@?@?@???@@???????Moderate&@ @ZbKKK@@@@Elizabeth Taylorenglish/scottishZ Kcustomer service repBNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z Ke0Z. Ke0about 6 or 7 i thinke0Z%%"Ke0Noe0e0Z/,)K6@6@ Unsuccessful6@Z=2.Ke0 Unsuccessfule0 Successfule0Z 44Ke0ZO9K@@??@?@?@?@??@@@@@@@Severe*@"@Z]LLL@@@@Tammie D. Stammers caucasianZ LBNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z Le0Z Le0Z Le0Z-%"Le0 early 20'se0e0Z6,)L@@Somewhat Successful@Z$0.Le0 Successfule0Z 22Le0Z 44Le0ZO9L??@??@??@???????Moderate@@Z]MMM@@@@ Nicole TullyIrish, ScottishZ MstudentZ Me0e0e0e0e0e0e0e0e0e0e0e0e0e0Z Me0ZAM0Severe sinus infections on affected side of facee0Z Me0Z ""Me0Z%$Me0e0Z **Me0Z ,,Me0Z ..Me0Z 00Me0Z 22Me0Z 44Me0ZO9M???@Mild@ZNNN@@@@ Susan EmeryACaucasian (both parents & all grandparents etc. are from England)Z NCall Centre managerZ NNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0My toes often loose their feeling and go purple or extremely white (like there is no blood getting to them). Both my GP and accupuncturist said I have Raynauds phenomenon / disease in a mild form (I believe this is the loss of circulation to extremities. e0fI get really sore spots at the angel my jaw opens and closes. Sometimes so sore I can't even touch it.Z1 Ne0early 30's. I am now 37e0Z ""Ne0Z%$Ne0e0Z **Ne0Z ,,Ne0Z ..Ne0Z 00Ne0Z 22Ne0ZO4Ne0OP ON GOOD SIDEI had a plastic surgeon who felt it was safer and more feasible to make the healthy side look more similar to the unhealthy side. He did a complete facelift and took fat away from the healthy eye lid to give more of an even appearance. So it was a cut froSomewhat SuccessfulI still have a fairly flat dent on my left cheek where all I see is bone. Skin is very thin on that cheek bone. Left eye is more sunken than right eye.@@@?@@?Mild0@?ZVOOO @ @ @ @ Clare FlaxmanenglishZ O bookkeeperZ Oe0e0e0e0e0e0e0e0e0e0e0e0e0e0Z Oe0lMy mouth doesn't open very far .... the jaw doesn't stretch much. also my lower right teeth are falling out.gI am on medicine for depression. Last year my 46 year old husband died. we were married for two months.e0about 35 perhaps.e0Z%%"Oe032e0e0Z('O'being pregnant I feel really sped it upwhen I'm tired it is more obvious. When I[m very stressed it seems to speed up. I think it went active again last year when my husband died.Z **ObZ ,,Oe0Z ..Oe0Z 00Oe0Z 22Oe0Z 44Oe0ZO9O@@@???@????????Severe&@@ZTPPP"@"@"@"@ Angela BrightwhiteZ PRNAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z Pe0Z Pe028e0Z ""Pe0Z%$Pe0e0Z/,)P@@ Unsuccessful@Z ..Pe0Z 00Pe0Z 22Pe0Z 44Pe0ZO9P@??????Moderate @ZQQQ$@$@$@$@ Manuel PueblaLatinHispanicStudentAPositive$@$@$@$@$@$@$@$@$@$@$@$@$@$@Z/"Qe0Sometimes my jaw is locked and it's a lot of strain as I feel there is some kind of cramp in the muscles of my neck and below my toungue. Usually happens when I'm nervous or in a stress situation; also in cold environments.>When I was a toddler I had bronquitis (is it spelt that way?).e07No, I am not even sure if it stopped but I guess it dide0The athrophy became more and more evident as the rest of my body developed normally, but as far as I'm concerned it stopped in my early teens (about 14 years old).e0Z%$Qe0e0Z **Qe0Z ,,Qe0Z ..Qe0Z 00Qe0Z 22Qe0Z 44Qe0ZO9Q??@?@@?@?Severe$@@ZWRRR&@&@&@&@ Marilyn Neal CaucasianZ R HousewifeOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z"Re0I have muscle spasms in my Romberg's affected jaw muscle. When I was diagnosed at age 16, the spasms were quite severe. As I have grown older, the spasms are still there but not to the same degree. Now I get quick little spasms that cause me to bite the iI have tissue loss on my side above my waist on the Rombergs affected side. It is a deep crease there. It has not caused me any medical problems that I know of.e0!I feel it stopped in my late 20'se0My atrophy took most of the tissue on my right side cheek and chin. I also have bone loss in my forehead and temple areas and around my eye. My atrophy was a very slow process over many years. It started around the age of 9 and had burned itself out in mye0Z%$Re0e0Z-,)R@@ Successful@Z;2.Re0 Successfule0 Successfule0Z 44Re0Z&O8RII do not believe it is possible for surgeons to give us perfect symmetry.@?@@?@@@???????? Very Severe(@@ZZSSS*@*@*@*@Andrea M. RodriguezwhiteZ7 S/Production Manager for Screen Printing DivisionZ Se0e0e0e0e0e0e0e0e0e0e0e0e0e0VI think it's because I'm a smoker. My dermatologist does not think that it's Raynauds.e0~Had TMJ for over 3 years now. My dentist, orthodontist and oral surgeon do not recommend anything other than wearing a splint.Let's see, where do I start. Allergies is first and foremost. I have seen and opthamologist because of a pseudo tumor behind my left eye. (The affected side) I also had a problem earlier this year due to many headaches. For the most part, I get sick realle017e0Z'"Se0 around 19e0e0STRESSJPossibly stress, I had just left college and took on a 40 hour a week job.Z **Se0Z ,,Se0Z ..Se0Z 00Se0Z 22Se0Z 44Se0ZO9S????@??@?@??Severe @@ZaTTT,@,@,@,@Jo-Ann D'AngeloItalian AmericanZ- T%International Compensation SpecialistZ Te0e0e0e0e0e0e0e0e0e0e0e0e0e0Z Te0Z TI did see a US recognized immunologist who had a interest in Parry Rombergs and she did extensive blood work. She explained that my blood work showed signs of immunologic disorders but not enough that I would be fully diagnosed with one. I usually have a e024e0Z%%"Te021e0e0ZZ''TRIt may have gotten worse during a pregnancy but I honestly cannot say for certain.Z **Te0Z-.,Te0Somewhat Successfule0Z 00Te0Z 22Te0Z 44Te0ZO9T@??Moderate@ZQUUU.@.@.@.@ Pam UnReinWhiteZ ULegal SecretaryOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0I was diagnoised with Raynauds phen. about one year and extreme tiredness before the fat on the right side of my face almost totally disappeared.e0I would get muscle spasms under the right jaw since I was 16 years old and I still have them on occasion, I am 39. When the muscle would relax the jaw would not feel so tight, it would come on when yawning widely or sometimes chewing foods.At age 8 I had an ulcer, 11-colitis, at 15-I had a fatty tumor (benign) removed from the left side of my chin, almost immediately after that surgery the rt. side of my chin did not look right, I went through 2 more surgeries from a plastic surgeon at age e0not really, because the face changes so much from intake of salt to hormores that unless it is a major change it is hard to telle0Z%%"Ue023e0e0Z('Uafter the birth of my second child and I had lost the birth weight, the fat on rt. side of face disappeared also, I am 5-4 and weight 98 lbs after the birth of my sons I weight maybe 95 lbs.not that I know ofZ$,*Ue0 Successfule0Z ..Ue0Z 00Ue0Z 22Ue0Z 44Ue0Z76UI do think that at 19 when I had all my wisdom teeth taken out by inpatient surgery I did notice a change in the rt. side of face. SuccessfulZO9U?@??@@????????Moderate&@?ZVVV0@0@0@0@ Silvia MolerHispanicHispanicMicrobiologistONegative0@0@0@0@0@0@0@0@0@0@0@0@0@0@{Sometimes my hands and feet get very cold. At night I have to sleep with socks so my feet don't get cold and become purple.0@ZNV=Excesive swetting from my armpits. Back problems (scoliosis).e0Z Ve0Z ""Ve0Z%$Ve0e0Z6,)V@@Somewhat Successful@Z ..Ve0Z&20Ve0 Unsuccessfule0Zu74Ve0ALLODERMJAlloderm in 1999. It helped a lot and the procedure was not to complicated SuccessfulZO9V@@@??????????????Moderate$@@ZPWWW1@1@1@1@ Tom SabelWhiteZ* W Social workerOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0I have the scleroderma from Rombergs on the left side of my face. I have been diagnosed with colitus, depression,and possibly thyroid trouble when Iwas very younge0I use to have the spaams where the area under my jaw on the affected side of my face would get knotted up and I had trouble opening my mouth. This problem has disappeared since I began to take Celexa and Buspar.Z( We038-39 I think.e0Z ""We0Z%$We0e0Z **We0Z ,,We0Z ..We0Z 00We0Z 22We0Z 44We0ZO9W@??@?@??@?????????Moderate(@@ZgXXX2@2@2@2@Susan L. Spiesegerman/english descentZ Xrural letter carrierOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0ZF Xe0Can't remember what the doctor called it but the joint is not right on the romberg's side of my face. It gets sore sometimes & I cannot fully open my mouth without painjfibro-cystic breast condition had 1/2 my thyroid removed due to tumor...needle biopsy showed hurthle cellse0 late 20'se0Z ""Xe0Z%$Xe0e0Z **Xe0Z ,,Xe0Z ..Xe0Z 00Xe0Z 22Xe0Z 44Xe0ZO9X@????????@Mild@@ZYYY3@3@3@3@Jane Valerie SandallHBritish (Irish/Scottish) caucasian (is that the correct spelling !!!???)Z YComputer SystemsZ YNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z Ye0Z Y{miscarriages and premature birth of baby at 26 weeks which died after 9 days. i have not been successful at having childrene0 pre-teense0Z ""Ye0Z%$Ye0e0Z*)Y??Z&.,Ye0 Unsuccessfule0Z 00Ye0Z 22YbZ 44Ye0Z76YAfter a series of silicone injections over months, I had to have 1 operation to try to drain out silicone that was previously injected but did not stay in the Rombergs areas of face. It moved to areas which had softer tissue. the Rombergs areas had toughe UnsuccessfulZO9YModerateZZZZ@Y@@Y@@Y@@Y@ Julie BackeP1/4 Scottish & 1/4 Swedish - the rest is a Heinz 57 mix of welsh/german and moreZ ZCorporate ParalegalZ ZNegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z Ze0ZhZWHave deveoped allergies in recent years. Sinus infections on left side. Bowel problems.e0Z Ze0Z ""Ze0Z%$Ze0e0Z **Ze0Z ,,Ze0Z ..Ze0Z 00Ze0Z 22Ze0Z 44Ze0ZO9Z??@?@???@?@Moderate&@@Z[[[[Z@Z@Z@Z@Pam Kerr (for Nikki)WhiteZ [e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z [e0Z [e0Z [e0Z$%"[e09e0e0Z **[e0Z ,,[e0Z ..[e0Z 00[e0Z 22[e0Z 44[e0ZGMG[e0e0e0e0e0e0 Very MildZ\\\[@[@[@[@Annette Marie (Halladay) Morris3French, Irish, Belguim, French Candain and AmericanZ \)Sales Clerk and Full time college StudentAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z8\e0'The doctors have diagniosed me with TMJZ# \e0 not sure,e0Z ""\e0Z%$\e0e0Z/,)\@@ Unsuccessful@Z ..\e0Z 00\e0Z 22\e0ZO4\e0RECONSTRUCTIVEvthey put in plates, to build up the bone, one across the cheek (under the eye) and one across the jaw and on the chin.Somewhat SuccessfulThe lipo, that was inserted into the cheek to puff it out, didnt take in the frist surgery and became infected and drain out it after the second.?@@@??@Moderate&@?Z]]]@[@@[@@[@@[@ Teresa BurksEI have Scottish, English, German, Irish and Cherokee Indian ancestry.Z ]Insurance adjusterOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z ]e0Z ]e0ZX" ]e0>I have alot of surgery, so I can't tell if it has slowed down.e0Z%$]e0e0Z6,)]1@1@Somewhat Successful1@Z-0.]e0Somewhat Successfule0Z 22]e0Z 44]e0ZO8]It was an awful experience@@@@@@@?@@??????? Very Severe(@(@ZW^^^[@[@[@[@Les BienkiewiczPolishZ ^,ex Army officer (22 yrs); now public servantAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z ^e0Z9 ^High blood pressure.e0mid 20se0Z ""^e0Z%$^e0e0Zd0)^@@ Successful@Somewhat Successful@ Successful@Z 22^e0Z 44^e0Z77^Somewhat SuccessfulZO9^???????Severe@@Zh___[@[@[@[@Sean William Pricewhite north americanZ _denta lab technicianZ _e0e0e0e0e0e0e0e0e0e0e0e0e0e0/only when iget very cold legs, hands get purplee0>sometimes if i am chewing gum it locks up and also feel spasmsZ _e0Z _e0ZK%"_e0(no,most damage was done in earlier yearse0e0Z **_e0Z ,,_e0Z .._e0Z 00_e0Z 22_e0Z 44_e0Z/O8_Ui am thinking of micro-surgery, i have saw many people do very well with this surgery@???????????????Moderate@@Zo```\@\@\@\@yvonne demarinofrench/italian/american indianZ `plant pathologistOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0KNo color change, but I am often cold in my extremities, feet hands and nosee0Z`As a preteen I experienced a time (weeks) when I had joint pains and woke up sore. I went to a doctor at that time, but no diagnosis was made. If I get sick (which is infrequent) it seems to settle in my chest. I used to smoke and had bronchitis. I was toe0Z% `e0RIt is so difficult to tell, I was undiagnosed for so many years I just ignored it.e0In my 30's. I don't know if it speeded up or it was because I married a man 6'4" and he told me it was worsening as he was always looking down at my heade0e0Z('`How can I know, but I do believe it's hormonally related. I feel it is increasing now and that hormonally I feel like I am having my last "hurrah" before menopause.None of this is quantitative.Z **`e0Z ,,`e0Z ..`e0Z 00`e0Z 22`e0Z 44`e0Z66`My "coup de sabre" is only on my head and is covered by my hair. It has just reached my forehead in one spot and I would consider surgery if it crossed my face.ZO9`?@?? Very Mild@ZYaaa@\@@\@@\@@\@Karen Hamilton CaucasianZ aRegistered NurseBPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zae0My jaw does not open very far and if made to at the denist office then it is very painful and the pain will last for days. Chewing gum also can hurt my jawI think I listed everything on the last page because I do not know what is relevant and what is not. I just wanted to say for the last question on rating my face. I rated it severebecause of what I looked like as a child. The surgeries have helped some ane0Z:% ae0Stopping the pain seems to help it some but I cannot really say that it has stopped or slowed down because the degeneration has been ocurring my whole life, even after the reconstructive surgery my face has always been doing this.e0$as a toddler and around 29 years olde0e0Z,'aYes pain seems to make it speed up. I was told as a child that I probably could not have children and so far I have never gotten pregnant.All I can think of is that when I was younger I did smoke some pot and I tried cocaine and it seemed to make it worse. I am embarrassed to admit this but I figure you should know all. But yet I do have to say that smoking the pot did help with the pain, b@@Somewhat Successful@Z ..ae0Z 00ae0Z 22ae0Z 44ae0Z66aI had an inguinal hernia as a child but I do not think that was relevant to this. I did refuse the silicone injections as a child. I am glad now because of the ramifications it has had on others. I was also offered the bone graft but turned that down. I lZO8aI do not have health insurance right now and have not for years and the cost of the care I have received has been tremedous. I have been unable to work for several years due to the pain and yet so far I have not really found any doctor that has been of an@@@?@?@@@?@@?Severe.@$@Znbbb\@\@\@\@Kathleen CliftMother- French / Father-GermanZ b-Owner/Vice President - Transportation CompanyANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zbe0My jaw has locked peiodically since I was about 10 years old. I still can not open my mouth wide enough to eat apples or a hamburger. I had braces on my teeth from the time I was 12 until I was 14. This seemed to escalate the jaw problem. Several times my}Xrays showed that part of the bone on the right side of my chin was missing when I was 16 years old. I have Stenosis - L4 L5.e0Z be0Z'"be0 18 years olde0e0STRESSlStress seemed to make it speed up. I had 5 stressful pregnancies and started my own business. Lots of stressZO.)b@@Somewhat Successful@ Unsuccessful@Z 00be0Z 22be0Z 44be0ZO7b SuccessfulThe silicone injections changed and damaged some of my features and the operations made me look better. The fat from the injections dissolved within 6 months. I am very lucky. Makeup covers up most of my faults. My PRS seems to be very mild compared to ot???@Mild@?ZVccc\@\@\@\@ Nickie Snow CaucasionZ cTV News producerZ ce0e0e0e0e0e0e0e0e0e0e0e0e0e0Z ce0After my first reconstructive surgery my jaw started to crack when I opened it too wide but is it better now. I only get lock jaw during times of stress.I have patches of numbness all over my body--predominantly on the right side but a few little spots on the left side. I have one large chunck of numbness on my upper right thigh. In the areas of numbness, no body hair grows.e0%I believed it stopped around 23 or 24e0Z\'"ce0,it rapidly sped up 18-22yrs and then stoppede0e0STRESSI can't be sure, but I partied a lot in college and that's when the atrophy really began to become pronounced. I lost about 30 lbs and drank college levels (that's a lot) of alcohol. Some how I think that the alcohol and lack of sleep contributed to poor Z6,)c@@Somewhat Successful@ZM2.ce0Somewhat Successfule0Somewhat Successfule0Z 44ce0ZO9c@@????Moderate@?Zddd]@]@]@]@,Liz Taylor (from USA) - not elizabeth taylor#swedish, scottish, egyptian, frenchZ? d6research coordinator, dietitian, exercise physiologistANegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0in the winter only, cold handse0Cused to spasm and stay locked, would have to wait and then pry openZ de0Z de0Z ""de0Z%$de0e0Zt,(d:i don't think it ever stopped with me, just keeps going on??Somewhat Successful?Z ..de0Z 00de0Z 22dbZ 44de0Z1O8dYinitially the fat graft worked well but since the disease continued it ate up all the fat?@@?????@Severe"@@ZWeee@]@@]@@]@@]@L. Kelly Irish/ GermanZ estudentOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z ee0Z' ee0 6-7 years olde0Z ""ee0Z%$ee0e0Z''eThe Romberg's stopped or seemed to stop for about 5 years. But we are not sure beacause it is a very mild case and very slow moving. just before it restarted my daughter hit her chin a couple times by falling. She is a dancer.Z **ee0Z ,,ee0Z ..ee0Z 00ee0Z 22ee0Z 44ee0ZO9e?? Very Mild@ZSfff]@]@]@]@Denise H.W. EisenbergZ fstudent w/ part time jobAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z fe0Z fAt one poit, i had been really stressed and uptight while in a fight with a family member and my right arm began to shake or spasm. It didnt last long. We went to a neurologist and he said in extreme cases that can happen to any one. But in any case we wee016e0Z ""fe0Z%$fe0e0Z6,)f??Somewhat Successful?Z ..fe0Z 00fe0Z 22fe0Z 44fe0ZO6fin the same surgery as the fat graph i had an implant put in. my mother and i arent sure exactly what it is called but it is artificail and the name of it has 3 letters and it starts with an "H". Successfultoday is January 15, you recently called me to finish this half of the survey. i had my 1st and only (so far) surgery on Oct24 or 25. i had a fat graph from my abdomen to my middle cheek and the implant implanted inmy upper cheek to replace my cheek bone.@??@????@?@Moderate&@@ZVggg^@^@^@^@Amanda BolingerwhiteZ' gcertifed nursing assistantAZ ge0e0e0e0e0e0e0e0e0e0e0e0e0e0%My hands get blotchy when there cold.e0Z ge011e0Z ""ge0Z%$ge0e0Z*)g@@Z&.,ge0 Unsuccessfule0Z$20ge0 Successfule0Z 44ge0ZA76g)I've had a silicone implant under my eye. UnsuccessfulZO9g??@???Severe@Zhhh@^@@^@@^@@^@)Kiara Higgins Mother Colleen doing surveyaustralia and englishZ he0e0e0e0e0e0e0e0e0e0e0e0e0e0Z he0Z"hCoeliac diseasee04e0gTreatment seems to have halted most of kiaras atrophy but as she is growing it is hard to tell how muche0Z%$he0e0Z*)h??Z ,,he0Z ..he0Z 00he0Z 22he0Z 44he0ZO9h???Severe?@Z\iii^@^@^@^@Sylvia Hajdukovic SlovenianZR" i housewifeOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Hands and feet very colde0*Cant open wide extrodinary pain in the jaw!Right breast as mentioned earliere030e0Electronic treatmentse0Z%$ie0e0Z''isecond pregnancyZ-,)i@@ Successful@Z ..ie0Z 00ie0Z 22ie0Z 44ie0Z"76i tissue graft SuccessfulZO9i?@??? Very Severe@?ZTjjj^@^@^@^@ Kristi DavisfrenchZ jadministrativeOZ je0e0e0e0e0e0e0e0e0e0e0e0e0e0HMy hands (and usually my feet) are always cold, even when it's warm out.e0I get pain in my jaw.Z je0Z je0Z)%"je026-27?e0e0Z''jI answered no to most of the questions above, but I'm not sure if it has slowed down or actually stopped. Since it hit so quickly and deteriorated so fast, I'm not sure that it has stopped altogether.Z*)j@@Z ,,je0Z ..je0Z 00je0Z 22je0Z 44je0Z76jI had a new type of implant put in. I'm afraid I don't remember the name of it right now. My doctor had a CT done of my skull, then created implants that he thought would fill the "holes" best. UnsuccessfulZO9j@?@?@?????@?????????Severe(@@ZVkkk_@_@_@_@ Deepa Jacob christianZ kTeacherOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z ke0Z:k)urinery infections and menstral disorderse0Z ke0Z ""ke0Z%$ke0e0Z **ke0Z ,,ke0Z ..ke0Z 00ke0Z 22ke0Z 44ke0ZO9k@@@?@@@??Moderate&@@ZWlll@_@@_@@_@@_@Victoria NorrellWhiteZ lHelpline workerZ le0e0e0e0e0e0e0e0e0e0e0e0e0e0Zle0fWhen I get stressed or tired I find I am unable to fully close my jaw. It hasn't happened for 6 monthsmI have (although now much improved) - suffered with a very low /weak immune system and always used to be ille0Z le0Z ""le0Z%$le0e0Z/,)l@@ Unsuccessful@Z-0.le0Somewhat Successfule0Z 22le0Zq74le0PLASTIC>Plastic graft to forehead to even out depression on right sideSomewhat SuccessfulZO9l?@@??@@@Moderate0@?ZSmmm_@_@_@_@ Janet TaylorWhiteZS mContract SpecialistAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0rI have one very small, quarter size, patch of skin without pigment on my right elbow, but I have always had thatn.e0&Once or twice I have had my jaws lock.Z me035e0Z ""me0Z%$me0e0Z6,)m@@Somewhat Successful@Z ..me0Z 00me0Z 22me0Zy84me0EYEstrabismus suergerySomewhat Successful3my eye looks better, but I still have double visionZBMGme0e0e0e0e0e0MildZnnn_@_@_@_@Bonnie F. Keenum2White American with some Cherokee Indian ancestorsZ. n&Adm. Manager in Construction - RetiredZ ne0e0e0e0e0e0e0e0e0e0e0e0e0e0Z  ne0I have had surgery for the right jaw as a result of the left jaw being out of line. The left jaw has been a problem from the beginning and reconstructive surgery did completely align the two jaws.As stated earleir I have been living with intestinal problems for many years and no diagnose solves the problem. I have taken medication for both stomach and intestinal problems with no results. Tests so far have not given any answers. During the years ofe0Has never completely stoppede0Z ""ne0Z%$ne0e0Z6,)n4@4@Somewhat Successful4@Z ..ne0Z 00ne0Z 22ne0Z 44ne0ZO9n???????? Very Severe@@Ztooo`@`@`@`@ Jacob McGowan%Caucasion - American - Father EnglishZ oNot applicable - childZ oe0e0e0e0e0e0e0e0e0e0e0e0e0e0Z oe0Z oe0Z oe0Z$%"oe06e0e0Z **oe0Z ,,oe0Z ..oe0Z 00oe0Z 22oe0Z 44oe0ZBMGoe0e0e0e0e0e0MildZLppp `@ `@ `@ `@no name pleaseZ p"program director of alzheimer unitAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z pe0ZS p&obesity, cellulitis, infections, ezemae0in my thirties.e0Z!("pb late thirtiesbbTRAUMAialthough I thought it was in remission and started again after a trauma tothe head as i mentioned before.vI can't be sure, but when i was on a diet drug with phentermine I thought that it had speed up the deterioration also.Z **pe0Z ,,pe0Z ..pe0Z 00pe0Z 22pe0Z 44pe0ZO9p???????Severe@@Z qqq@`@@`@@`@@`@Tina Frances Michelle Paterson MIXED RACE Mixed raceNURSERY HELPERZ qe0e0e0e0e0e0e0e0e0e0e0e0e0e0LHANDS ALWAYS FEEL COLD I AM NOT SURE OF BLOOD GROUP I THINK IT IS B POSITIVEe0Z qePALPITATIONS, IRREGULAR HEARTBEAT, DEPPRESSION, CATTERACT, MIGRANE, BACK PROBLEMS ON RIGHT HAND SIDE,e0 14 -15YRSe0Z0%"qe0 4YRS TO 10YRSe0e0Z*)q@@Z ,,qe0Z ..qe0Z 00qe0Z 22qe0ZZO4qe0TISSUE EXPANDERTISSUE EXPANDER TO EXPAND HEAD TISSUE ON BALD PATCH TO ALLOW TISSUE TO BE TIGHTENED MAKING BALD PATCH LESS NOTICEABLE. OPERATION FOR TISSUE TO BE INPLANTED UNDER BROW ON FOREHEAD FAILED CAUSING INFECTION, OPERATION PERFOMED TO REMOVE INPLANTED TISSUE UnsuccessfulXI HAVE LOOKED AT THE PICTURES BELOW, PICTURE 1 AND PICTURE 2 IS MYSELF AT A YOUNGER AGE.@?@?@?@@@@@@@@@@@@@Severe,@&@ZXrrr``@``@``@``@Sherree WakefieldwhiteZ rhouse wife/motherAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z? re0:not exactly lock jaw, put yes i can't fully open my mouth.I just found out that i have an iregalure heart beat. And i have endometriosis that justgot trated for. i am currently seeing a maxiofacial sugeon and a plastic sugeon. And i am about to be seeing a ganetics doctore.e020e0Z ""re0Z($re0e0STRESSMy daughters birth at age 20 was very trama tizzing i had to have an emergeciy cesection, this past year i had another sugery at i noticed again more deteriationI was put on depo lupron shots for my endometriosis this year after my sugery. this stuff also got me to have fluttering heart problems. the reason wy i had to have an emergency cesection when i had my daughter was because a nurse gave me someone elses meZ **re0Z ,,re0Z ..re0Z 00re0Z 22re0Z 44re0ZO9r@?@?@?@@?@@@????????Moderate(@&@ZTsss`@`@`@`@ Nestor ChavezlatinZ sstufdentZ se0e0e0e0e0e0e0e0e0e0e0e0e0e0Z se0Z se09e0Z ""se0Z%$se0e0Z **se0Z ,,se0Z ..se0Z 00se0Z 22se0Z 44se0ZO9s?@@@@??@? Very Severe&@@Z~ttt`@`@`@`@Samantha Beth Bishop(English Canadian - Irish/Scotish/EnglishZ tLab AssisstantOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z te0Z te0Z te0Z ""te0Z%$te0e0Z*)t??Z ,,te0Z ..te0Z 00te0Z 22te0ZI74te0RHINORhionoplasty (spelling?)Somewhat SuccessfulZO9t@????????Mild@@ZSuuu`@`@`@`@ Robin NelsonWhiteZ u HomemakerAZ ue0e0e0e0e0e0e0e0e0e0e0e0e0e0Z ue0Z# ue0 around 36e0Z%%"ue020e0e0Z((uOkay I have always had a thin face but not to the point where it took everyone's attention when I went out in public but when I got pregnant it started thinning more instead of gaining weight in my face I lost it dramatically and from there it gradually bZ **ue0Z ,,ue0Z ..ue0Z 00ue0Z 22ue0Z 44ue0ZpO8uI have had no surgical procedures. I am consulting with my third doctor(cosmetic surgeon) on Monday, fat injections have been recommended at this stage.@@@?@@@?Severe&@@ZSvvv`@`@`@`@ Marijke ZoonDutchZ v2PA - personal assistant to SVP Finance at KPNQwestOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Zve0Not really the jaw itself but the muscle connecting the jaws - sometimes when I jawn the muscle is "stuck" and hurts like the stretch is out of it. Then after 1 minute or so, the tension is of the jaw muscle. It only happens when I jawn.Z*"ve02001e0I started to have the illness in a period of tremendous stress in my life, when I lost a lot of weight because of not eating or eating not healthy. Since 2 years my life is back to normal as well as my eating habits (spline function and kitney working proe0Z%$ve0e0Z-,)v@@ Successful@Z ..ve0Z 00ve0Z 22ve0Z 44ve0ZO8vI had 2 fat injections - the result was good in the beginning but after 6 months the fat disappeared again. After the second operation a little fat stayed from the 1st operation but again 6 months after the 2nd operation it was back to before. Since 2 mon??Mild@Zwwwa@a@a@a@Shandra HubbardAFRICAN-AMERICANAfrican AmericanREGISTERED NURSEAPositivea@a@a@a@a@a@a@a@a@a@a@a@a@a@Z+ we0I'VE GONE TO DENTISTS OVER THE YEARS TO HELP WITH THE SEVERE PAIN THAT WOULD SEEM TO BE DENTAL PAIN. IT BEGAN IN MY EARLY 20'S AT THE SAME TIME THAT I NOTICED THE DIMPLE IN MY CHEEK. MY PAIN WAS SO GREAT THAT I BLACKED OUT AND CAME TO ABOUT 5-7 MINUTES LAWHEN I AM SICK(FLU,FEVER,SORE THROAT,ETC.) I FAINT. BEEN HAVING UNEXPLAINED BLACKOUTS SINCE I WAS A TEENAGER, 13 OR SO. I HAVE BLACKED OUT EVEN WHEN I WASN'T SICK. SOME DOC'S IN THE PAST HAVE SAID THAT I AM BORDERLINE "ANEMIC" BUT NOT ENOUGH TO CAUSE ME Te028e0Z%%"we026e0e0Z6,)w??Somewhat Successful?Z ..we0Z 00we0Z 22we0Z 44we0ZO8wAFTER 3 INTERVIEWS WITH 3 PLASTIC SURG. ONLY 1 SUGGESTED A FAT TRANSPLANT. I HAD IT DONE LAST DECEMBER. I REABSORBED A LOT OF MY FAT. MADE ME VERY SAD BUT MY FACE LOOKS BETTER THAN IT DID. NO ONE EVER MENTIONED ROMBERGS DISORDER. FOUND IT BY ACCIDENT. VER??????@Moderate@@ZWxxx@a@@a@@a@@a@ Vicki Noble AustralianZ x OHS ManagerBZ xe0e0e0e0e0e0e0e0e0e0e0e0e0e0Zxe0Over the years I do not seem to be able to open my mouth as wide as I used to. For example, I can only take small bites of fruit and cannot eat anything cold.Z xe0Z" xe0I think the changes to my lifestyle, diet, less stress have assisted in my well being and I do not suffer from headaches as much. However the tissue wasting is still happening, but has slowed over the last 15 years and is now very slight deterioratione0Z%$xe0e0Z/,)x@@ Unsuccessful@Z-0.xe0Somewhat Successfule0Z 22xe0Z 44xe0Z77xSomewhat SuccessfulZO9x?????Moderate@ZYyyy`a@`a@`a@`a@Heidi Del-TorchioFrenchZ yMotherAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0?My pains come from my right cheek and my forehead when its colde0Z ye0Z ye0Z ""ye0Zu($ye0e0STRESSWhen I'm tired?Since I was pregnant the seizures happen less often than beforeZ **ye0Z ,,ye0Z ..ye0Z 00ye0Z 22ye0Z 44ye0ZO9y???@@Severe@@Z\zzzb@b@b@b@Bryan McDowell Irish/GermanZ zstudentZ ze0e0e0e0e0e0e0e0e0e0e0e0e0e0Z ze0Z ze0Z ze0Z ""ze0Z%$ze0e0Z **ze0Z ,,ze0Z ..ze0Z 00ze0Z 22ze0Z 44ze0ZO9z@@????? Very Severe @@Zk{{{a@a@a@a@Kelly SillimanIrish, Itallion and EnglishZ {%The best job in the world...A Mom! :)APositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z {e0Z {FEpstein Barr Virus, IBS, Female problems(as I explained in first part)e0pI Can't answer this acuratly because it started again quite recently, but had slowed down for like a year or so.e0Z%"{e0jIt started when Iwas planning my wedding 1995 but dfinitly speeded up when I became pregnant early in 1996e0e0ZM''{EDefinitly pregnancy...first three months and then after delivery too.Z*){@@Z ,,{e0Z-0.{e0Somewhat Successfule0Z 22{e0Z 44{e0Z88{My first reconstructive free flap took 11 hours and was a total failure. I swelled up so much that some skin actually died on my cheek. I actually had a whole there for some time before the stiched it up and now have a scar going across my cheek. My seconZFMG{e0e0e0e0e0e0ModerateZ |||a@a@a@a@ Heidi Febles Spanish/CubanHispanicSenior Manager/ITOZ |e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z|e0QMy jaw locks up periodically. Its like the muscle is having a spasm and it locks.#I have had ovarian cysts and Polypse0Z" |e0I had several surgeries. I had tissue removed from my belly and inserted into the face. It didn't seem to work so they removed tissue from my butt and inserted into my face. I think it has slowed down but now i feel like it is affecting my eyes.e0Z%$|e0e0Z/,)|@@ Unsuccessful@Z ..|e0Z 00|e0Z 22|e0Z 44|e0Z_76|@A large piece of dermis from my butt and inserted into my face .Somewhat SuccessfulZO9|@???????Moderate @?Z[}}}a@a@a@a@ Amy BennettWhite AmericanZ }Computer ProfessionalBPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z }e0Z }e0Z }e0Z%%"}e031e0e0Z*)}??Z ,,}bZ ..}e0Z 00}e0Z 22}e0Z 44}e0Z+76} Brain biopsySomewhat SuccessfulZO9}@????@??@@???????Moderate&@@ZO~~~ b@ b@ b@ b@Sara CAUCASIANZ ~ self-employedOZ! ~e0e0e0e0e0e0e0e0e0e0e0e0e0e0They are permanently numb and feel constantly cold & tingling.. when in hot water or cold temps this effect increases and they turn bluish-purple.e0Z ~e021e0Z ""~e0Z%$~e0e0Z **~e0Z ,,~e0Z ..~e0Z 00~e0Z 22~e0Z 44~e0ZO9~@@@?@@??????????Mild*@@ZY`b@`b@`b@`b@ Jocelyn Clark AustralianZ Social Work StudentZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0Z e0Z1" e0It has never progressede0Z%$e0e0ZI,(Mine is not progressive.@@ Successful@Z ..e0Z 00e0Z 22e0Z 44e0Z66|The operations were wonderful when I had them done. As I get older the implants and tissue graft are obvious as I get older.ZO9@?@???@@@?Moderate$@@ZZb@b@b@b@Lauren Couchoud CaucasianZ  home makerBPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Z e0Z e0Z e0Z(%"e016-21e0e0Z''i noticed the most change after I got married at 16 and had my daughter also at 16 I had another daughter at 18 and a son at 21. the changes have been very gradual, but it is durring these last few years I've noticed the largest change.Z*)@@Z ,,e0Z ..e0Z 00e0Z 22e0Z 44e0Z76biopsy of my right eye lid at age 3 to determine why my lashes fell out- scar tissue was found. but cause for loss was not determined. at age 12 I had reconstructive surgery of the lid to close the gap. (the center lashes fell out- or 1/3 total lashes) th UnsuccessfulZO9@?@???@?Mild@@Ztb@b@b@b@Lauralee Pasko$white (western european and spanish)Z% information technologye0e0e0e0e0e0e0e0e0e0e0e0e0e0I've been diagnosed with a mild case of Raynaud's. My hands, feet and nose are always cold and become purple and numb in cold weather. Recently, after exercising in the cold rain, my right index finger and like right toe started to ache and I experienced e0*Had TMJ as a child. Went away on it's own.Rdepression, fatigue, panic attacks, general confusion and forgetfulness, headachese02-3 months of onsete0e0e0e0ZO'stressLI have recently been diagnosed and have not taken any drugs for my symptoms.I've noticed the scleroderma plaques seem to start in places that have scars already - I have a scar on my right cheek, which is the result of having a mole removed as a teenager. I've noticed in the past few months, the scar has doubled in size. Addition@?@?@?@@?@@@????????Moderate*@(@ZPc@c@c@c@Annabelle WoodZI% Studente0e0e0e0e0e0e0e0e0e0e0e0e0e0eWhen the weather is very cold, the fingers on her left hand go white and her hands feels all tinglelye0e0e0e06e0e0Z?O'e0e0e0e0e0e0@??@????@?? Very Severe"@@ZX c@ c@ c@ c@ Sandra Lehman caucasionZ"% Registered NurseOPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0e0-abnormal CBC diagnosed as bone marrow probleme0e0e0e0e0ZmO'1it has been steadily progressive since it startede0e0e0e0e0e0@@?@???@?@??Moderate@&@ZT@c@@c@@c@@c@ Gokhan CeylanWhiteZ %  TechnicianAe0e0e0e0e0e0e0e0e0e0e0e0e0e0e0#Change in structure and appearance.e0e0e0e0e0ZDO'@?@?@?@@?@ Very Severe&@@ZZ`c@`c@`c@`c@Henrik Thrling kaukasianZA% studente0e0e0e0e0e0e0e0e0e0e0e0e0e0XThe color of my hands range from very red to almost purple when exposed to cold weather.e0Have an area, a oval spot (about the size of a small matchbox) under my left breast. I got it when I was about thirteen and got it diagnosed. It was a fairly rare type of skin disease that was said to have most likely been caused by an insect. But since Ie017e0e013-16e0e0ZOO'4e0Somewhat Successfule0e0e0e0e01st operation: Expander placed under skin over the 'coup' to stretch skin. This for... 2nd operation: An so-called "acrylat" (sort of plastic) were fitted to the bone to cover the 'coup' (left forehead, left side of skull (top of head)). 3rd operation: Fa????@????@@@Moderate"@@Zdc@c@c@c@ Amlie LozeauNorth American, whiteZ% occupational therapiste0e0e0e0e0e0e0e0e0e0e0e0e0e0My hands are often colde0YMy jaws were not closing properly: One of my jaw was 'oblique' and the other 'horizontal'I saw a dermatologist recently because I noticed that I lost hair near to my forehead on my involved side: I am taking now Rogaine 5% to try to control this losse016e0When I had a surgical reconstruction of the forehead with silicone, the atrophy at this level stopped but not at the level of the angle of my jaw and the cheek.e0e0e0Z[4'2e0e0e0e0e0e0ZO61)Acrylic (that's the substance the surgeon told me- I was 16) fixed on my skrull and shaped to fulfill the loss 2)Realignment of the 2 jaws by provocative fracture SuccessfulI am waiting for a 3rd one who consists of a soft tissue layer taken on my back to be fixed directly on the inferior jaw to increase the angle of the jaw. To increase the size of my cheek, my surgeon advise me to have fatty material injections@??@@?@Severe @@ZVc@c@c@c@Maria BattagliaWhiteZ% Studnete0e0e0e0e0e0e0e0e0e0e0e0e0e0It just started a week ago.e0e0e0e0e0e0ZGO'5e0 Successfule0e0e0e0e0@??@???@Moderate@@ZOc@c@c@c@C. MoodyWhiteZ% Studente0e0e0e0e0e0e0e0e0e0e0e0e0e0e0first symptom was vitiligo around mouth and nose- He was 4 years old and I took him to an dermatalogist and was told to not do anything but watch it. 12-14 months later, I started noticing the atrophy of the face on that side. At times his face looks likee0e0e0e0e0Z<O'e0e0e0e0e0e0???Moderate@ZGc@c@c@c@BrianZ% e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0ZO'e0e0e0e0e0e0e0e0e0e0e0e0Z^d@d@d@d@Amy Michelle Becker caucasianZ[% Pediatric ResidentOPose0e0e0e0e0e0e0e0e0e0e0e0e0e0e0QMy jaw often "pops" and is painful, but I have full range of motion of the joint.I have pernicious anemiae0e0e0e0e0Z[4'1e0e0e0e0e0e0Z%O66Plastic surgery on my scalp to remove the bald places. Unsuccessful@???@?@@?? Very Mild@$@Za d@ d@ d@ d@Catherine Parramore white - u. kZ?% primary school teacherAPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0during each of 4 pregnancies.e0slows down during pregnancy.e0 After birthe0e0ZO'Hgiving birth and periods of stress are sometimes followed by a flare up.e0e0e0e0e0e0@?@@???@???Moderate(@@Z}@d@@d@@d@@d@Deborah D. Fambry*american with german/indian /irish(decent)Z%% medical assistantBPositivee0e0e0e0e0e0e0e0e0e0e0e0e0e0Mat times my hands have stayed cold and achey and get a blueish tent to them .e0most all DX:have passed with time . except the vetiligo and the joint pain and swelling also my son has a patch of silver that appeared on the rt side of his head about the size of a half doller when he was 12 after a seizuer.e0e0e0e0e0Z4O'e0e0e0e0e0e0@@@@@?@????????.@@Z_`d@`d@`d@`d@Monica M. Seiberling caucasianZW% occupational therapiste0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0eI wish I knew. My docs thought that the meds I was on may have helped (Aspirin, Tegretol, Propranolole0e0e0ZO'e0e0e0e0e0e0My physicians advised that I avoid surgery- not sure what "speeds up" the atrophy. Injury to the face was one theory and so they said try not to have any surgery@@@@??@Mild$@@ZVd@d@d@d@ Ellen Foley CaucasianZ% mother, landscape designerOe0e0e0e0e0e0e0e0e0e0e0e0e0e0Basically, when my hands get cold, the ends of my fingers get numb and whitish. It doesn't necessarily have to be cold out. It can sometimes happen when I am holding a cold drink or if I am in very cold air conditioning.e0e037e0e0e0e0ZBO'1e0Somewhat Successfule0e0e0e0e0??@??????????????Mild@ZNd@d@d@d@ Shannon BirdZ% e0e0e0e0e0e0e0e0e0e0e0e0e0e0:I ussualy changecherry red colour by just standing outsidee0e0e0e0e0e0ZHO' methotresatee0e0e0e0e0e0?@?@??Moderate @@Z\d@d@d@d@derek tyler albertsonwhiteZ% elementary school studente0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e0Z:O'e0e0e0e0e0e0??????????Severe@?ZZd@d@d@d@Jamie Wilkinson CaucasianZ% Real Estate agentONegativee0e0e0e0e0e0e0e0e0e0e0e0e0e0e0e024e0e0e0e0Z`O'30+e0 Successfule0 Unsuccessfule0 Successfule0e0e0????? Very Mild@ZUb@b@b@b@ Alisa Sisk caucasionZ teacherOZ e0e0e0e0e0e0e0e0e0e0e0e0e0e0ZVe0EIt was thought to be an inflammation of the TMJ and it does re-occur.Z e0Z\" e0BIt has progressed across my scalp and just above the left eyebrow.e0Z%$e0e0Z **e0Z ,,e0Z ..e0Z 00e0Z 22e0Z 44e0ZO9@?@@??@@???Mild(@@ZML Very Severe&@ZMLSevereA@ZMLModerateJ@ZMLMildB@ZML Very Mild$@8 !  ;( Parry_Patients;Nq9 Parry_Patients_data_from_Aug_02;Nq" Survey_2;I( Survey_2_query;O( Survey_2_query;MP$ & 3  @@   MdI have not been diagnosed with migraine headaches, but i do have very severe headaches from time to time and the only thing i can do to ease the pain is sit in a dark room and close my eyes!nausea, trembling hands, sweatinggI get pain on the left side of my face which usually starts around my chin and moves up toward my eyes.my lips are unevenyI do have alot of joint pain in my fingers, knees, and toes. I don't know if this is related to Romberg's disease or not.fMy Romberg's disease is located on my chin. When I was nine years old, I had a biopsy done on my chin.pI had one phase of cosmetic surgery when I was 12, but the surgery was never completed due to financial reasons.zWhen I was young I was very allergic to poison ivy and everytime I would break out with it, it would start out on my chin.BI am very thankful that someone is doing research on this disease.2810 College View Drive ChurchvilleMD21028 410-569-4844tlynch@baynational.comb46-50I had a surgery in 80's for two herniated disks which left me with partial paralysis in right leg, foot and rear. My right leg is weak and I don't know where to draw the line between the paralysis and the Romberg's. I had a pulmonary edema in Jan. '02 andI'm sorry I don't have a picture at this time. Many doctors for many years had no idea what my disease was. I lived for many years thinking I might drip dead at anytime. I have adjusted my lifestyle hundreds of times to see if there was anything I could d27 ORCHID LANE NEW HYDE PARKNY11040 516-489-3776SALEZITO@AOL.COMyACUTE PAIN SOMETIMES FEELS LIKE A LIGHTENING BOLT. SEEMS TO BE BROUGHT ON BY WEATHER CHANGES, CERTAIN SOUNDS AND FATIGUE.UNABLE TO THINK.CAN BE ANYWHERE, BUT MANY TIMES IT SEEMS RIGHT SIDED. DOCTOR HAS NOT CALLED IT ANYTHING SPECIFIC BUT GIVES 5X RENEWAL OF 100 TABLETS OF ESGRIC?SORE EYES -- ALWAYS USING MOISTURE DROPS. OPTHALMALOGIST STATES THAT THERE IS A SCAR VERY NEAR THE CORNEA BUT DOES NOT BELIEVE IT IS RELATED TO EN COUP DE SABRE. DOCTOR ALSO SAIDTHAT RETINAL VESSELS HAVE THE APPEARANCE OF SOMEONE WITH HIGH BLOOD PRESSURE, BUT INTERNIST CHECKS REGULARLY AND I DO NOT HAVE HIGH BLOOD PRESSURE.0CONCUSSION FROM AN ASSAULT AT NINE YEARS OF AGE.INTERNET FORM WOULD NOT FILL THESE BOXES IN -- BOTH UPPER AND LOWER ARM AND BOTH BACK AND ABDOMEN AND BUTTOCKS AND BACK OF RIGHT HAND HAVE MORPHEA SCLERODERMA.325 beach 57 streetarvernenew york11692meci005@aol.com'the eye tooth won't come completly downBmy top lip on the left side is crook it like it's pinched together/I wear glasses but than so do most of my family-Had a biopsy of a piece of skin from my chin.I had fat graphs inserted, which didn't work. Had collagen cream. Took some pills, however I don't recall what they were, need to go back and find the boxes. I did keep them for some reason.POn my mother's side of the family I have a few relatives with nervous disorders.|When I was little(around 8 or 9) I felt off a swing and had to get stiches on the back of my head. It was a pretty hard hit.Number lateralised Ipsilateral Contralateral PRs with coupThrobbing sensational pain, as though someone had jammed a knife in my head. Doctors are trying to figure out if this is related to the syndrome; also why I suddenly have a bump on my head and numbness. Tons of fun without insurance. In fact, I just had a'forehead, sometimes the back of my neckespent 5 years with a beligerent orthodonist. Teeth are still sort of crooked, but I really dont care.3my lips are almost "normal" but slightly unbalancedsince the upper part of my forehead is indented, my left eyebrow is a little funky looking. After two surgies (one at 9, one at 11) it looks a little better. I have bangs and wear hats.I'm 20/40 in my right eye and blind as a lawsuit in the other. But I drive and things. Periphial vision and 3 D theaters are unknown pleasure to me.At one point the pressure in my left eye (this was several years ago; I gave up on doctors in 1997) was extra low and they had to give me some sort of steriod drops.)I can still see to read, if looking down, but between age and everything else, it is a chore sometimes and too much can lead to headaches. TonguetInitially had a Tensilon test for Myasthenia Gravis (negative res.), Also had biopsy of skin from bald spot on head.;I got sober! Everything seemed to fall apart after that ;-)There is also the "ridge" from the bald spot on top/rear of my head to the left temple. That was what prompted one Doctor to realize the Coup de Sabre, it does truly feel as if there was a cut made. The scleroderma diagnosis was made by a Dermatologist at3522 Evan Acres Rd, Apt 15Madison53718(608) 224-1768sopita_00@elsitio.comThe teeth on only the left side of my face (the affected side) were not straight like the right. The adult canine tooth would not grow in properly.[The lips on the left side of my mouth were considerably thinner and tighter than the right.+I had atrophy on the left side of my tongueSometimes, my TMJ will lock up on the left side, so I have to massage or stretch open my mouth to get it to loosen back up. I alos notice tenderness underneath my jaw if I press firmly. There is atrophy underneath my jaw. Skin biopsies0Topical steroid creams and ointments. Plaquenil.DRheumatoid arthritis-I was told scleroderma is related to arthritis.withwithoutLine and Cheek or Chin(jada@epco.org or jcallaway2001@yahoo.comRomberg Disease Gray streak on right temple area6Throbbing of right eye and muscle spasms in right eye.QGum deterioration on bottom right side. Recently had gum grafts to repair damage.Thinner bottom lip on right side even after surgery. Surgery was approximately at age 14-15. Dermabrasion and some tissue replacement inside the bottom lip.~My chin area is still tender and easily prone to feeling bruised if I rest me chin on my hand or sleep on that side too often.Numerous dermatologist misdiagnosed this when the discoloration appeared. A doctor at Vanderbilt University in Nashville Tennessee diagnosed the disease.I had reconstructive surgery and for the most part, it took care of the asthetic side affects of the disease. From what I now understand, my case was very mild comparatively.16811 NE 12th St Vancouver98684adrianacampbell01@attbi.comkHorrible pain that can last for days, feels like your head is pulsating, worse on the left side of my head.Nausea!Left side of face is very tender.Left side of lip is raised..Left eye vision has progressivly gotten worse.I have constant muscle pain in the neck and back, blury vision sometimes, skin changes on face that are more red than the rest of the skin.7No treatment, have been waiting to make sure it's done.Mother took fertility drugs?cHad minor symptoms, after car accident and damage to left side of face, symptoms rapidly progressedFacial damage in car accident.I would just like to find out if my constant muscle pain in my back might be tied to this disease I have because none of my doctors can seem to figure out why my back hurts all the time.13810 East Palomiono Drive Ft.Lauderdale33330 954-434-8969linda.d.brink@wcom.com-loss of eyebrow hair and atrophy of the scalp9I have actually lossed my hair in the scalp area invlovedMy left ear is also smaller than my right. Also, I have passed out many times between the ages of about 6 and 24. Mainly, when I would get hot or hear very loud music. The doctor ran tests and said that I had epileptic tendencies.I think this is great that you are researching this. It took many years and doctors before my family found out what it was. Even then, the doctor that diagnosed me had only remembered it from reading about it in a book. He did several inovative surgeries Cape Town8000Lsmal@pawc.wcape.gov.zaDull throbbing pain usually. Sometimes get shooting pains throughout my skull. Usually accompanied by pain in my left eyeball, blurred vision, nauseau and a dizzy sensation. Very adverse to light and noise when I get these headaches. Makes me very i< rritabStarts on the left side of my face by my forehead and left eye. Moves over to the right side of my face (cheek and jaw). My eyeballs, skin and facial bones feel very tender and sore. Sometimes I get a tingling sensation in my face also.The teeth along the right side of my upper jaw have shifted inwards. My teeth get very sensitive and sometimes I cannot even chew on that side=The right side of my upper lip is thinner than the left side.I often have blurred vision - especially when I have facial pain or headaches. Cannot see very far. The pupil of my right eye is a different shape to that of my left eye.IMaybe - my father has angolosing spondolitis which affects all the joints Contractordutch air force9-11\rhinoplast, had some of the skull put in my cheek and muscle from my arm into my cheek area. SchoolchildThe bruce is on the jaw occ back painalmost immediatelyAsian ScientistAnxDepI participated in a program run by the U.S. government in the late 1970's in which silicone was injected into my check and chin to help the assymetry. I also have a silicone plate in my chin from the early 1970's. I was treated although never given a diagI would appreciate any information that you can give me about my new diagnosis. I was in the dark for so many years and I am so releived to finally know what the diagnosis is.702 weaghington roadbradleys.c.29819 864-227-2772jonbean@emeraldis.comit seems that i have always had headaches. just over the past six months they have been unbearable and severe and they are messing with the rest of my life.on 2 recent doctor visits ( because of the pain) this trigeminal neuralgia was brought up by the doctor. of course they did not know if it was related to th rombergs. i have an mri scheduled for may 16 2002 at musc in charleston s.c. and we will go from t]it is on the right side of my face. doctors have been trying to blame it all on my bad teeth.my bottom right teeth are all messed up. musc actually did oral surgery to remove my wisdom teeth and since then when they hurt i just goband get them pulled- thats what i was praying the problem was but i guess i couldnt get that luckeGmy right lip was pulled up as my face atrophied. still does to a point. my right eye brow drops a littlemy life has been some what miserable. i had a free omentum flap done at the medical college of georgia in 1985 when i was 20. of course this was very painful and my face has been a lot fuller on that side since the surgery. it has been very numb for many SAs a child I can remember falling off swings and having to see a doctor. No surgeryI have very annoying clicking noises in my jaws when I am chewing. My children always comment on them. My MRI showed several hyperintense foci in the periventricular deep white matter of each parietal lobe, which were nonspecific, but could represent fociHave been diagnosed with Hashimotos - under-active thyroid this year. Have had a benign tumour in the right knee. Both shoulders have noticeable wasting, but I think this was due to having frozen shoulders some time back. Research indicates this is a chil Raymond Woolf11359 Haswell Dr.ParkerCO80134 303-841-0666woolfing@aol.com Left side of the lip is thinner.EI believe that the left side is slightly thinner than the right side.oThe reconstructive surgery were only fat injections. The doctors think my case at this stage is only very mild.qI reckon it could be stress. Maybe even puberty, larger amounts of testosterone in puberty can do strange things. 24 Calle 33-22 Zona 7 Col. Kjell Guatemala01007 (502) 4349727anselmiju@yahoo.comthey are thinner"my lower lip is thiner in one side my tongue is thinner in one partvI have had two cirguries but I have not been satisfied with them because in a little time the problem is evident againwIt would be great if someone would find the cure for this disease because it is too bad having it, I wish you good luck5750 hiram powder springs rd.powder springsgeorgia30127 770-439-9852 metjmt@cs.comi have an identical twin who does not have the disease. know anyone who would like to see if it is genetic? i would like to know how i got this disease and to get a cure or surgical proceedure to rectify the effects of it! oh, by the way my twin is right 492 Boom RoadSaco04072(207) 284-0208alcorn5@gwi.nethair grows in a up wayIwhen they discovered the romberg's disease but they called it sclerodermafalling and hurting my headNina Sofia Abrahamsson>the mother Anna Karin answering the survey Linnankatu 55 h 292turkuFinland 02-2302687!anna-karin.abrahamsson@sydvast.fisorry my english isnt so good - but I would describe them like "grand Mal" but always just when she is going to sleep in or to wake up. I am not sure about if both sides of the body shakes, but i think both sideshard to describe for a child9we dont live with nina sofias father so we cant be sureqi dont have any conserns - but do you know if the epilepsy also is progessive, or can it be treaten by medicine?Yuxi Fu%195 Life Sciences Addition, MCB #3200Berkeley 94720-3200yxfu@uclink4.berkeley.edujk5 contralateralINJURY?FORCPESMy nose, the right hand side is thinner around the nostril than the left one. Also I have two bald patches on my head, one on the very top, the other on thecback left top(confused??Sorry, it's hard to explain in words.) They have almost joined at the back.N. 7007 Neveda Apt.45Spokane99208 509-869-4874jayfields69@yahoo.comxget tremdous headaches that feel like somebody has put me head in a vice and closed it. They go front to back of my head1408 Williams BlvdRichland99352ads1923@yahoo.com?no hair growing on my right eyebrow or top part of the eyelash.Bi don't know if it is related, but my right eye gets blurry often.A long dent from the middle of my skull down to my right eyebrow. the skin is attached to the skull and there is no hair growth in that area. I have not been proffesionally diagnosed yet, but I have seen a doctor and he and his coleague both determined thI first noticed the dent when i was 19, but looking back in pictures it was visible when I was 17. It seems to be getting worse as i get older.2333 Basswood Drive Little ElmTX75068 972-668-9030grdane03@msn.comleft side of face sinking in.Most of his hair is a very white-blonde, but he has a spot of dark red hair in a circle. He has had this since birth, thought it was from the internal cardiac monitor that they screwed into his head during birth.3severe pain with vomiting and sensitivity to light.I'll have to check with Seth.=His adult teeth are still coming in and they are very crookedMy husband remembers an uncle that had 'something wrong with his face'. Dave thought he had muscular dystrophy . Seth's older brother, Joshua, age 19, also has some deformity in his faceZI think my husbands sister takes Dilantin. That would be Seth's aunt on the father's side.Seth had 2 sisters that died of heart disease, he has had tachycardia from an ancellary pacemaker sight that seem to have resolved.l6/7/01 CRASHED ON BICK, HAD 6 STITCHES IN HIS HEAD, THIS IS WHEN WE FIRST REALLY NOTICED THE FACIAL CHANGES.His growth rate has dropped dramatically. He was born 8lbs 1 oz 20 inches and was always in the 95% on the growth charts. Within the last 2 yrs he has not grown appreciably. He is now in the 10%. He had an appt with the Pediatric Endocrinology at the UnivSeth's older brother, Joshua, age 19, also has some deformity in his face. Dr Sinn at UTSW, did a bunch on xrays and photo's ect. He would need a Laforte and something else to help bring his twisted jaws into some type of alignment. He cannot close his liThey have talked to us about reconstructive surgery. Dr P Craig Hobar MD, craniofacial at UTSW, said that the disease should stop when Seth reaches puberty. But after reading some of the stories on the internet, I wonder if that is correct information. It 15 Royston Avenue,Basildon,EssexSS15 4EW< tracey@adams800200fsnet.co.uk'My hair started to fall out in one spot4the left side lip is really thin and droops slightlysI now need to wear glasses as my left eye is quite week,and the eye doesn`t go to the sides or up and down properly159 Taybridge RoadLondonSW11 5PY 07753 9630321NJL@lineone.netxGums not developed or disappeared. Teeth wouldn't adjust when I had a brace which has later been attributed to Rombergs.gDefinately slanted and don't lie straight. Better when I keep up with my eletric stimulation programme,]Not really except the way it grows into the shape of my brow. I think they both move the sameNot sure if its related by my left eye is actually my stronger eye, my right eye is very weak and totally dependent on my left eye.Yes I have a bald patch of hair on left hand side on the top of head that has been there for quite a few years and in that area my skull is sunken as well. Size 4cm x3 cm..My father has Myberg? Not sure if its relevantI kneed my self in the face whilst doing gymnastics. I bruised where I hit myself on my top lip left hand side, the bruise still hasn't gone!!hIf its any use, I was born in Zambia, Africa, I know some people think Romberg is linked to the tropics.After surgery when to a physiotherapist, Diane Farragher who specialising on facial issues. TO keep the muscle transplanted from my back in my face bulky I have an electrical stimulator which I use. As well as making the muscle remain bulky part of teh pr2/20 Luke Court, Summerhill LauncestonTas72500363445091 or 0417562173jlharris505@hotmail.comxA frown line in the centre of my forehead which developed into a large dent with the depletion of fat and muscle tissue.Severe pain on right top side of head, constant and thumping pain, vomiting, fuzzy vision on usually right or sometimes left side, followed by blind spots, directly where I am looking, which get bigger as the headache goes on, numbness of hands, feet, lipPerhaps not pain, but tightness on the right-hand side of my forehead, feels a bit like a tight belt around my head, constant tension, which is quite tiring.NNot exactly sure, but quite a few of my teeth on the right top side have died.My eyebrows are not even, the left one is a lot higher than the right, due to fat and muscle tissue loss. My forehead dent goes down through my right eyebrow.Short sighted, astigmatism in right eye, and in the last few years I have experienced some peripheral vision loss, according to my eye specialist this is due to a rare side effect of migraines?I have had liposuction from my stomach to be able to have fat injections into the right hand side and centre of my forehead, I had surgery nearly 3 months ago, have lost about 30% so far but is a huge improvement and the tightness is nearly gone, no heada[breast cancer, diabetes, haemachromatosis, soriosous (skin condition not sure of spelling).gHead first off a motorbike onto the ground(forehead) aged 14 /blow to the head middle forehead aged 19.OI thought extreme stress at the time and also being hit in the head at 19 yearsI also have dizzy spells occasionally and days where I feel like I'm floating around in a bubble (just not with it) and also really confused and can't remember anything. I also have trouble keeping my weight on, I seem to lose weight for no apparent reaso1970 Hawk Street S.E. Cleveland37323 423-473-9229crdill_36@yahoo.comI had a seizure when I was five years old and the facial changes started happening after. My left side forehead and left side jaw was affected.1My left eye has a blue shade more than the right.vMy hair is not different colors but I have patches of baldness on the left side of the top front close to my forehead.The first one I had at age five was a grand mal seizure. Until the age of 17, they were petit mal and changed back to grand mal until the present time.dilatin, tegretol, zonegran_I lost two of my permanent teeth on my lower jaw shortly after they came in when I was younger.I have night blindness and have trouble seeing at night driving. The last seizure I had was triggered by the headlights of an oncoming car8The left side of my tongue has hemiatrophy like my face.When I was diagnosed with Parry Romberg in 1980, six doctors from different countries observed my surgery because it is such a rare disease. Dr. Phil Craft from Chattanooga, Tennessee performed my surgery at Erlanger Medical Center and I have been told by1 speedy cheval street fremantlew.a6158 0893397909speedydunne@global.net.aui've had 'headachs' on and off for 14 years at first they were classed as migraines and were treated acordingly.i started to notice that the pain is always on my right side of my forehead the same side as my rombergs.over the last 3 years it's been unbear&lack of movement ie.when frowning ect.Oi have an atigmatisium in my right eye ?due to rombergs (sorry i'm not the bestGermanyaxelwurster@web.deGreen and Brown,Tissue surrounding the teeth is disappearingLeft side is thinnerSome times it is itching in the cheek. I have psoriasis at the left cheek and around the eyes. As a child I had morbus perthes in my left hip which I believe could be of relevance. Ultrasound>I fell off a swing as a kid and had to get stiched on the head)According to blood test a pretty sure yes11554 state hwy 33Cashton54619(608)-654-5358jpleuck@hotmail.comOThere is a darkened, slightly sunken in, area of skin above my right upper lip.fA dermatologist only looked at my head, told me it was hemiatrophy and said it was basically harmless.\I took some kind of medicine for a month or two, but it didn't help, so I stopped taking it.~I was hit with a baseball and a baseball bat before when I was in little league, but not in the spot where the hemiatrophy is.The area of skin on my forehead started as only looking like a bruise, but slowly became dented in slightly, and it has not changed in size for a couple of years now.7812 Hilo Court Diamondhead Mississippi39525(228) 586 0776Carr.Corri@worldnet.att.netStart on the left side and I can not stand light or the smell of food. They can last for serveal days. longest time was 4 days.They can make me every ill.left side of face will have shape stabbing pain and then here lately my lip will go numb and the nerve will pull the lower part of the lip down for a couple of secondsdThe joint will also be pulled in and out of the sockit. This and go on all day about 3 to 4 an hour.left side of my tongue now will swell up with the spasms and I have a tend a see to bit that side of my tongue during the spasmsIt also effects my speech when I've had a couple of the spasms during the day. and the spasms happen the most at night when I go to bed.Trileptal(oxcarbazepine), Neurontion 800mg 3 times a day, Elavil(amitriptylin) 25mg 2 times a day, klonopin(clonazepam .05mg 1/2 tab 3 times a day.Grandmother had Byepoler+my pergency made the spasms come full swingleft side upper lip is a little smaller then the rest of the lip. and sometimes during the spasms the lip will go numb and be pull down or can sometimes be pulled up. that just started the other day and this can go on for serveal minutes, and sometimes wiI had jaw surgery when I was 16 back in 1992 and everybody seemed to think that this is why I'm having the problems that I'm having. The spasms get worse when I'm under a lot of stress.I hope that I can learn more about this disease and if by doing things like this will help me and others with this disease I see no ethical problems. I have a one year old daughter that I would like to see grow up and not have her to see me go though the 455 24TH AVENUE NORTH ST PETERSBURGFLORIDA33704 727-821-9951NORAROK54@AOL.COMUSUALLY CAN BE PINPOINTED TO ONE AREA, BUT NOT NECESSARILY THE SAME AREA EACH TIME. SOMETIMES HEADACHE MEDICINE WILL RELIEVE IT, SOMETIMES NOT.uONE LEFT LOWER TOOTH AFFECTED - DENTIST CALLED IT "ROOT REABSORPTION". LOST TOOTH AND NOW HAVE A BRIDGE IN IT'S PLACEnSINCE LEFT EYE IS SET FURTHER BACK IN< TO EYE SOCKET, EYEBROWS ARE UNEVEN. LEFT EYEBROW SETS ON UPPER ORBIT RIM.LEFT EYE LID DOES NOT CLOSE COMPLETELY. CONSTANT PROBLEM WITH THIS - DRY AIR, BRIGHT LIGHTS,AND WIND ALL AFFECT LEFT EYE. CONSTANTLY PROBLEM WITH EYE IRRITATION, AND VISION IS POORER IN THIS EYE. 8 Jerome StCanungra4275 0755434334"a 'dent' down center of forehead.7CI have bald spots on the back left side of head and the center headlCannot go near microwaves when on it only makes it worse same goes for mibile phones and sometimes computersfIt allways happens on the lefthand side it 'tingles' with the sensation going all the way to my scalp."A slight curl on my upper left lipMissing half my left eyebrow!Left eye going blurry I get olderMy Mother when pregnant with me took the morning sickness pill Debendox which the family though might have contributed to the condition. Not at all. full marks for you. 477 Dunbar Rd Tallmadge44278 330-630-0595tlaurich@neo.rr.com[Bald spot with skull depression left rear skull area- has beenfixedsize - not gettinglargerFocal seizures of right leg only for about one year -- then had one tonic/clonic full seizure before going on seizure \ medicationsjust one - CarbitrolPMotro cycle accident -- torn left ear drum from compression of the helmet (1986)Just heard about this disease/diagnosis today June 11,2002 Basically I hada small baldspot then two to three year later I started having right leg seizures -- the seizure got more frequent and I started seeing a neurologist. THen I had a full body sseizur114 Spring Street Lake CharlesLA70605mhaley3@compuserve.comMThe right side of my face began to disappear when I was in elementary school.Msometimes experience pain on the right side of my face. It is not very often.I have never had any treatment. When I was first diagnosed the doctor I was seeing wanted to place proplast in my face. My mother decided that was not an option. I have been to see a doctor as an adult, who discussed using muscle grafts ( I have NO muscleNot a head injury but neck pain. It was discovered through MRI that one of my cervical vertabrates was fused together naturally...I don't know if there is any connection RR 2 Box 208Mt. Pleasant MillsPA17853(717) 444-3514s1371973@cedarville.eduOthey appear to be in the process of maybe changing from hazel to a more blueishfI believe that this is unrelated to my PRS but I do have a slight blonde streak at the nape of my neckI don't know the term trigeminal neuralgia but I do have a lot of TMJ (temporal mandibular joint) pain. I would guess that this is from the wasting of the muscle and possibly other soft tissue around the joint.^On the left side, my lower lip is smaller. It makes the right side look fat or almost swollen.My left eye lid (NOT my vision) is a little droopy. This is barely noticeable and just recently discovered. so complications have been noticed as of yet.nregular X-rays not necessarily a CT scan All sorts of MRI, MRA and whatever else they can do with that machinedifferent creamsI know that my information may be sketchy. It is hard to remember it all. If you have any more quesions feel free to contact me. Ann Arbor Michigannchaia@netscape.neta dark patch of skin on my cheekbone near my ear combined with a deep indentation under my lower lip (a half-inch gash very deep) and a line from my hairline to my eyebrows dividing my forehead in half. I also have a line on my stomach to match itjust normal greyingI have only had 2. There is no pain but there is the bright light problem, quite severe, actually. I did not know they were migranes until recently.Bmy dentist says I have less plaque on the right side at cleanings.*I am losing fullness in my lower right lipmy eye hurts sometimesLMy doctor says the right side of my tongue is much less fleshy than the leftVThey have just taken blood tests, shall I email you next week when the results are in?7exercises from a physical therapist to manage the paiingWhen I was 8 I had a concussion, and had xrays taken. I never lost consciousness, but had bad headaches\I am from New England (near Lyme--ground 0!) but have not, to my knowledge, had lyme DiseaseI have noticed that the pain is more manageable when I do face exercises. I feel, in general, very asymmetrical. The line down my face and stomach has always been there. In the MRI they just took in the course of the diagnostic tests (I was diagnosed yest604 Alameda de las Pulgas, San Mateo94402 650 619 8024jscannell@hotmail.comAlopecia$Single seizure age 2, left arm shookHair loss and eyelash lossBRight pupil not reactive - severe iriti/ uveitis. Globe retraction/Methotrexate for a couple of months then stopee555 Blackburn Road Oswaldtwistle LancashireBB5 6AY 01254 389792PFHA, MorphoeaLNight time vision poor, eye closes when tired. I struggle to drive at night,Itchy left cheek Awaiting scan PUVA 2000adoptedyounger brother hgas LDBWhen younger aged 9-10 I had a huge head bump falling from a slide 7 Koznitz Dr.MonroeN.Y.10950 845-782-9490jr7826546@frontiernet.netPALE RED,BLOTTCHYHTHE UPPER RIGHT PULLS TO THE RIGHT SIDE.THE LOWER LEFT & RIGHT IS DROOPYCEPALOMETRIC X-RAYSMy son was born with Ronberg Syndrome.He looks like he has had a bells palsey. The Right side of his face is missing fatty tissue and one part of his skin is dry. His nasal fold is not in the center,and his lips are droopy. He has assymetry in his jaw. Hihad a normal pregnacy,carried full 9 months,& normal delivery. (Forcepts were not used) The assymetry was noticed right after birth1381 Penbrooke TrailDayton45459 937-435-3290blbittner@aol.comJat age 20 noticed left side of my face was getting smaller than the right.!Nothing other than gray mixed in!I had nerve tests 20 years ago.At age 17 I was hit in the head (right side) with a girl's elbow, while she was getting something from her locker. I saw stars and blacked out from the blow. I have always wondered if this had anything to do with the onset of Rombergs.After being diagnosed with Romberg's (on my 21st birthday) I have had multiple surgeries in an effort to minimize the affects of the atrophy on the left side of my face. My intial surgery was a free flap transfer of my omentum to my face. Since then, I ha Good luck.1210 N HERMOSA AVEBANNINGCA92220 909 922 0695OCHOAC28@HOTMAIL.COMDEAVIATED NOSEAWFUL PAIN-MIGRAINE HEADACHES0NAUSE, VOMITING, ANXIETY SCALP IS VERY SENSATIVELEFT SIDE OF FACE WHEN I WAS 12 ORTHODONTIST SAID IT WAS DUE TO THE EXPANSION OF MY PALET. NOW THEY TELL ME IT'S PART OF THE ROMBERGS?LIP IS THINER ON LEFT SIDE AND IT LIFT TO ONE SIDE WHEN I SMILE&MY PALATE DID NOT DEVELOPE WIDE ENOUGH-UNSURE IF MY 11YR OLD DAUGHTER MIGHT HAVE IT.,LUPUS ERYTHAMATOUSES (MOTHER) AUTO IMMUNE DZ250 Brownswitch Rd. Apt. #107SlidellLa70458 985-847-9321magravesg@netscape.net6I have a streak of silver hair in the back underneath.fwhen i was in day care I was pushed of the monkey bars and fell on top of my head and had a concussionistanbulthalassictribe@netscape.net8I havent been to Doc.yet ! yes strange though it looks..iI dont know whether it's athrophy or hemihypertropy,but one side of my body either shrinks or overgrows..9maybe on my left side in the past but realy insignificant$my teeth are deformed and assymetriconly slightly,insignificantpalatal deformity -assimetry ,when I was a kid I had an ortodontic treatment (in vain)also some degree of scoliosis.my left lover arm 1.5cm. shorter,lover arm also but I cannot measure.all in all it's 2 or 2.5cm shorter than the other.7046 19 Mile RoadBarryton49305 989 382 7948flawlessmiggy@hotmail.comTAround age 6 the upper left side of my forehead began to demonstrate an indentation.psoriasis. Hair; once in a while some brilliant greyish white hairs will spring up. I joke and tell myself it's the stress of college but really....Sharp stabbing pain in left temple to jaw linedizziness, nausea< 5left side, sharp, stabbing pain fromtemple to jawlineleft side in bad shape; can't open my mouth long enough (without pain) to have them treated. dentists don't beleive I can't keep my mouth open - very discouragingDdiagnosed 1978 w/ hypotony in left eye - legally blind 20/900 vision"no atrophy, but curves to the leftleft breast larger than right; indentation on left flank between shoulder blades; sensitive to touch; left side of abdomen has dark brown skin patchAbiopsy of dark patch on abdomen led to diagnosis of Parry RombergDsome type of foul-smelling salve whne I was 4 years old...no outcometHad tissue implanted in my face from left breast in 1974 - rejected; solastic (?) implant left cheek 1975 - rejectedthank you for your interest5557 Bobbywood Ave.San Jose95124 408-952-4254echemendia_c@vta.org|I had pain initially when the disease was active. I occasionally have pain now. The pain was on my left side of the jaw boneXYes my entire left side of the face is smaller than my right including my lip and tonge.IMy left eyebrow drops down more. There's no symmetry with the right side.vThe left side is smaller. My left ear canal is significantly wider than my right one due to the tightness of that areaHmm. How much would you like me to elaborate? And pray tell in what form? I suppose ethos is generally more interesting, so how about a manifesto? The Drama Of An English Major Who Is Sick And Tired Of The Weirdness And General Pain In The Ass Of Having S1421 Highway 130 West Shelbyville37160My main concern is that I want to know as much as possible if this is a hereditary disease and does my 10 month old daughter have any predisposition to develop this disease in her later years? Any ideas on what causes this disease, is there a common backg3711 Casa Ridge DriveMesquite75150 972-682-6802bethwilliams6@attbi.comhLong story short - indention on my forehead over left eye. Thought to be from forceps delivery at birth.Bald spot on top left side of head - totally devoid of hair follicles. And now I am getting a concentration of Gray in the front center of my hairline.Started having migraines with monthly period. But after the onset of problems with "disease", the migraines became a blinding first, then dizzy/nausious and ultimately intense pain behind left eye. Doctors could describe pain, but didn't quite get the bliI don't know if it's pain specifically, as much as pressure. Doctors just don't know what to associate it with, other than the general diagnosis.Bone loss over left eye. Had eyelid lift in 1993 due to Ptosis diagnosis at the time, they also injected Hydroxy Appetite Granules at the time to restore brow bone that was "caving in". Still feels funny, wish I hadn't let them do that.I have a "permanent wink", left eyelid has dropped almost to closed. One Dr. stated that at this point even if they could restore normal use of eyelid, that eye has weakened to the point where vision would not be decent.:Severe pain isolated to the right temple. That's about it.The area of my face (forehead) and scalp that is affected sometimes is VERY sensitive to touch. Frequently I have small bumps in my scalp that itch.fMy left eyebrow has fallen out has well as the eyelashes on the inside of the upper lid of my left eye_At least I don't think so. I'm having typical eye problems that I believe are just age related.*Two direct cousins have Multiple SclerosisI don't seem to have many symptoms other than cosmetic. My face and scalp get sensitive. Mostly it looks like I was in an accident. For the most part no one really notices my condition unless I point it out. I've been considering having an eyebrow tatooedThe only real test I had was a "plug" taken from my scalp when I was first diagnosed. I had the opportunity to be seen my Dr. Jablonska (spelling might be incorrect) while traveling to Germany. I took a side trip to Poland and she interviewed and examinedNothing really. Took something for a while that was usually prescribed for epilepsy (forgot the name) but it only dulled my senses so I stopped. Sorry to be so vague. I had a close friend/boss who developed full blown systemic scleroderma and has since di Huskvarnaanderssonbo@yahoo.se3Teeth not grown straight on left side of upper jaw."Atrophy on left side of upper lip.Atrophy on left side.)Nose not straight, it points to the left.UPerhaps an inflammation in a tooth at 3 years of age. Could this really be a trigger? St. LouisMissouri63128fillaj@swbell.net^I have lost several teeth on my left side. Those that are still there have a root canal/crown.lI have very few eye lashes on the lower part of my left eye. My left cheek, chin, and neck are all affected.VMy 12 year old daughter has had seizures, but has been seizure free for about 4 years.I first showed symptoms when I was 10, in the form of purple-red patches on the skin of my face. It was two years before the doctors agreed on a diagnosis-localized scleroderma. However, eventually, they started calling it Parry Rhombergs Syndrome. I was Corso B. Aires, 2MiItalia20124+39 33561566503356156650@tim.it%fossetina grande in guanccia sinistraLa mia malattia ancora non diagniosticata deffinitivamente. Sono russa e scoperto questa malattia da dottori russi, pero abito in Italia e non resco seguire una logica3 blueberry hill rd Spring Valley10977 845-426-0540&Just at the begining of here left sideShe did have surgery, The doctor put in some tissue from here shoulder, But the doctor said she will need surgery again when she turns 12, Because then she will have grown more/don't no but i could recomend you to my doctor.4158 Drummore Lane Cincinnati45245denise@atomicx.comBlue with brown stripe:had grey hairs since was child on both head and eye lashesDI can't think clearly. I feel nauseous. Everything sounds very loud._On left side under my eye, sometimes. It feels like someone is pulling a string out of my face.\I have a very small mouth, and had to have wisdom teeth pulled so other teeth could come in.GLeft side is smaller than right. Harder to close left side all the way.Thinner on left side.Vision is fine but I do have a brown spot on my eye that only the eye doctor can see when he looks in my eye. My left eye does not close all of the way. It sometimes gets dried out and I have to put medicine on it and wear an eye patch.I have had at least 6 surgeriescousin due to birth defectIwas taken out by forceps at birth and they scraped my face leaving a scar>My mother believes it was the forceps but the doctors disagreei have been a guinea pig for alot of tests. so many i cant remember. when i was five i had to lay in the sun and take pigment medicine.pthere should be financial aid to help us. i am glad they gave the new medications to me cause i can afford them.W4249 Ridge DriveLaCrosseWI54601 608-788-2648cjdrago@gundluth.orgJprogressive facial asymmetry noted in photographs between 2 and 4th gradesBClass II malocclusion with cross bite on the left (affected) side.%left side is less full than the rightless full on the leftAtypical uvula;No concerns. I wish you well. I am a prosthodontist who has been practicing for 20+ years and have only seen 1 patient with this disorder. Good luck. 1/4 Gibson Court, Altona Meadows3028ozphila@space.com:The I noticed the left side looked thinner than the right.}I have facial pain after the two fat injection operations I had. The doctors said the pain might have been face just healing.XWas going through a very stressful time when I first started getting the symptoms. LymeI have an indentation (which has a bump behind it) on the middle of my skull. This gets tender sometimes and I have this tingling sensation on my skull. I also have a bald patch on the right hand side of my head. I have no eyelashes on the bottom lid of mI find it a relief to be able to describe my symptoms to someone who's really interested. Aside from the physical damage to my face it has affected me emotionally too. I am < very shy and insecure, because I'm always aware that I'm different. It's not easy 26 Sharon CrescentMountain CreekQ455754447820hotelcharlie@bigpond.com7Wasting of subcutaneous fat on right hand side of face.My pain is only minor, along the right jaw and cheek bones. It is not bad enough to require medication at this point, but is uncomfortable.UI don't know, but don't think so. I think I have only had Rombergs for 6 - 12 months.JMy top lip on the right hand side looks to have become marginally thinner.tAs I'm 50 this is a hard one. I have just had my reading glasses made stronger, but my long distance sight it great.dWas asked about my tongue by the specialist and of course have never bothered to look at it to know.rLike someone is squeezing my head with vice-grips; sensitivity to light & noise; can't focus; nausea - no vomitingThey are crooked on the right side in back. Have had braces twice; helped the rest of my teeth but the right side is never straight; like a curved line of teeth.Not as big on right side.w?maybe? Recently have noticed pain & yellow spot in my right eye - interestingly, recent diagnosis of "lichen sclerosusolead me to investigate Parry-Romberg's also and I read about eye problems. Have not been seen for it yet (eye)."Bigger on left side than on right.EItchy skin. Could the lichen sclerosus be related to Parry-Romberg's?Car accident; mild concussion.NWas told I was borderline so didn't need any treatment. Why? Are they related?[We need a cure or reversible treatment! This is really difficult to live with, emotionally.26 Kaikoura St, Henderson(09)8387024 or 025316217l_renouf@hotmail.com}Sometimes I have pain in my forehead and around my eye, where the atrophy is. Also sometimes in the back of my head and neck.=The right side of my lips are slightly thinner than the left.The hairs on my right eyebrow, nearest to my nose , have fallen out, where the atrophy is. There is also what seems like fat betwwn my eyelid and my eyebrow.CThe right hand side of my tongue is slightly smaller than the left.Right side weakness#Forehead weakness on the right sidejdouble vision due to right eye not moveing properly. Also dryness and my eyelid does not shut all the way.georgina raper8-14 jerome st canungra gold coastQldboodlepip2002@.com.au_renching ongoing head pain that lasts for a few hours.But as mysteriously as it appears it goes5left side it twiches I've ignored it most of the timeleft side, upper lip.7left eyebrow,missing a"patch" near the start of my eye.left eye goes blurry sometimes.dont like going near microwaves or mobile phones sometimes even computers when they are on.Ive always been sensitive to such things.:mother had menengitis when young had left back ear removed;fell down stairs when i was very young on a concrete floor. anton veugen townsvilleantonandrobyn@optusnet.com.au(occasionally, only when having headaches"jaw out of line, sometime painfull*my lip on the right side is small in widthID"What is the name of your conditionHave any other names been usedLine? Jaw / Cheek Chin indentEn coup de sabreParry-Romberg Syndrome!initially thought to be aleopeciaparry romberg morpheamorphoeaRomberglinear sclerodermaen coup de sabre Parry-Romberg SclerodermaFacial Hemiatrophy&Linear Scleroderma, 'en coup de sabre'en-coup de sabreScleroderma en coup de sbareNoScleroderma'en coup de sabre'@Yes, PRS (as indicated above) and progressive facial hemiatrophynoHemi-Facial Atrophy9Semi Facial Atrophy, Linear Scleroderma, En Coup De SabreCthe 'en coup de sabre' as the line bewteen normal and diseased areaRombergs SyndromeScleroderma/Linear Sclerodermahemifacial atrophy4I have Facial Hemiatrophy secondary to Parry RombergHemofacial Atrophyfacial hemiatrophy>Every Dr. in my life has taken a guess. All wrong up till now.3ROMBERG SYNDROME AND SCLERODERMA 'en coup de sabre'hemi facial atrophyhemi-facial atrophy Hemifacialatophy (nothing added)MorphoeaPFHARomberg's DiseaseNOBIRTH MARK? AS A CHILDLeft Hemiatrophy Parry Romberglinear morpheaone doctor in about 1980 thought it might be Rombergs - this was the first time Rombergs had been mentioned. since then I have decided that it is Rombergs.'en coup de sabre'Facial Atrophy4progressive facial hemiatrophy - linear scleroderma.Parry-Romberg Syndrome/Disease$en coup de sabre, linear SclerodermaHemifacial atrophyParry -Romberg+? Linear/Morphea Scleroderma with Romberg'sRomberg's Hemifacial Atropy&Hemifacial Atrophy, 'en coup de sabre'soft tissue atrophyRomberg's hemiffacial atrophyLocalized scleroderma'14 coup de sabre with cheek involvement11 coup de sabre without cheek Mandy PerroAmerican wife/motherAI do not have Lupus, but my mother does have a form of it. (she doesn't have the butterfly rash) I do not have rhuematoid arthritis ( although my mother's side of the family has a very strong history); I do have osteoarthritis in my hips ( I was born with a dislocated hip on the left side--same side as PRS), back & left knee ( same side as my PRS) Was dx'd w/ ank. spond., but current dr. has changed dx. to osteoarthritis instead. Was positive for antibodies. Do have mild depression (family hx.Had TMJ; has orthoganathic (?) surgery to pull out the upper jaw ( alot ) & lower jaw. I have 'the smallest adult mouth" that most dentist & anesthiologists have ever seen. I have a very small opening when I open my mouth the most that I can.I have a history of mastoid disease on left side (PRS side) & profound hearing loss on that side as well. Have migraines--seem to be centered in left temple mostly. I was born at 7 months gestation, weighing 2.5 pounds. Having vision problems in my left eye. ( failed the vision part of drivers test because the field appeared blank, when there were actually letters in them.)The optometrist couldn't find a reason for this. Have an appointment at the end of Sept. to see opthamologist. When myAwhen I had the jaw surgery in my 20s, that seem to exacerbate it. see aboveSURGERYsurgerySomewhat SuccessfulNon-bonebone grafted from my scalp to left eye orbit. When they attempted to implant a non-bone cheek bone, my body rejected it & they had to remove it. I was also left with a dark dimple underneath the eye. UnsuccessfulMildPip Rutherford Australian Sales RepNegative,Especially during the winter months (some mornings get to -4 degrees) my hands will be like blocks of ice and the rest of my body beautifully warm. My right hand can be colder than the left at times. For instance, today is a very mild to warm day and my right hand feels cold. The left one is normal.-I ticked "yes" for Ankylosing Spondylitis. I think I mentioned to you before about my back problems and operation. I had spondylolisthesis which resulted in a fusion and instrumentation at the L5-S1 and a laminectomy. So I do not know whether they are one of the same thing. That operation was a great success but I am now having problems with the burning, cramping, numbness, tingling and dull fatigue in my feet and legs again. I have to ride this out until early November when I see my specialist again. Maybe things are happening further up in the back.In my early teens SuccessfulsFat was taken from my stomach and implanted in my right cheek area (just like stuffing a chook!!) Extra fat was implanted because over a period of about 12 months it subsided. The operation was an experiment (29 years ago)because the doctor did not know how much fat to implant. He guessed pretty close to the mark. When I can work my scanner I will send you some photos.I came beack to this spot after seeing the pictures. I have shrinkage of my right thigh with thinning of the fatty tissue. This was originally diagnosed as scleroderma after a biopsy was done. So my question is "Is there a connection with scleroderma and the Parry Romberg SyndromeModerate Julie BassettEuropean%Human Resource/Training & Development< OPositiveI have suffered from Asthma since I was 5 after having whooping cough and pneumonia (I hope that spelling is right). It isn't severe though.QI do have times when I get some joint pain on my affected side but not too often.!Gallbladder problems (Gallbladder removed 5 years ago) Back trouble (L5 disc disease) I also have odd teeth - on the related side, I have a molar which has one prong instead of four although one dentist says he thinks it is actually my wisdom tooth as I don't have one at all on that side.About 19It's hard to tell but I did try a homeopathy treatment and large doses of vitamin B (injections once a week for 6 weeks, I'm not sure on the amount but could find out if you're interested) Mitchell Hyde australianDjaw has gone out of shape. teeth don't close properly on right side.right eye has sunken back a bit and dose'nt close properly somtimes ,when he is asleep. having trouble with his mouth. dribbleing uncontrolable. xome trouble drinking from cup.%after treatment, already talked aboutfour and a halfwe sent info with first surveyMaecil Maris HiltonAmerican-- Germanretired-was bank officerSilicone implant on foreheadSevere Lucian Smith caucasianmilitaryAB&My hands tend to get cold very easily.My blood type is AB-, but I could not select this above. I do have a problem with my left eye becoming dry because my eyelids do not completely close.22sMy rombergs seems more pronounced in direct correlation with the amount of sleep I get. Less sleep, more pronouncedKimberley McMichael%Caucasian- (German, Swedish, English)Speech Language Pathologista gestational autoimmune disease- antiphospholipid antibodies during pregnancy The antibodies effect the blood's clotting factor causing it to clot more quickly which results in the babies low birth weight and possible miscarriages and blood clots in the placenta. I did not suffer miscarriage or stillborn baby. This condition is treated with injectable heparin. I think I told you about this in part 1. I think this is a separate condition from the Rombergs, but being pregnant definitely exacerbated the Rombergs. I have had 2 children. 16 and 30decrease in stress, and active exercise, It began at 15 when I hit puberty. After my body adjusted to the new hormones the disease seemed to stop a year later. During the first year of the disease I lost tissue under my eye with hyperpigmentation, but no other progression.age 25 and also age 29STRESSzpreganancy-possibly related to hormones again and stress, lack of exercise and poor diet all seems to cause it to speed upI feel that regular exercise and stress reducing exercise like yoga have a significant impact on improving circulation and increasing immunity and causing the disease to slow down. Also.... I feel that improving my diet by limiting animal meats and products and eating lots of organic fruits and vegetables could have an impact on slowing the disease. I feel that the pesticides in foods and the animal products can irritate the immune system and the nervous system. Breathing exercises...again to reduce stress and improve circulation.AllodermI am scheduled to have alloderm insertion. Alloderm is an inert sterilized skin in which the cells have been removed to avoid a reaction. Alloderm is now being used instead of silicone. My surgeon feels that fat injections which he used in the past were not very successful for this disease because the fat can be reabsorbed due to lack of blood supply and it causes scarring. For the alloderm insertion they will cut along the side of my face like they do for a facelift and insert the alloderm in my cheek, chin and forehead.|I will send you an email about the success of my surgury in November as it takes about 2 months for the swelling to go down.Michelle MacLellan CaucasianInsurance SalespersonApprox 22 years oldI have had a muscle flap implant in my cheek. The muscle was harvested from my right leg. It is also the right side of my cheek in which has atrophied. I also had a small dent in my forehead. She used a artificial implant for this area. The operation took place on June 14th, it lasted about 6.5 hours. I returned to work on July 31st. I have had no problems or complications so far. Note: I have never had fat injections or graphs. I was not able to deselect this.WNOTE: My 2nd Cousin has been diagnosed with Scleroderma and my mother has Fibermyalgia.Meagan Elizabeth Lee$White, Irish/French/English Heritagenone(written by Meagans' mom, Ellen) Meagan has trouble with her extremities, poor circulation? Her fingers/hands get chilled easily and turn very white5Epilepsy, currently under treatment with Neurontin. Left side impairment(lack of right brain function), facial atrophy, dental work done (braces & retainer) to correct teeth alignment. Headaches (migrane-type), counseling for depression. Trial of medication for inability to sleep. Some learning disabilities.179PUBERTY6rapid growth (age appropriate) onset of periods maybe.Meagan had a heel-cord lengthening (left leg) to improve her gait and make her be able to walk better (her foot more flat to the ground) she was becoming rapidly unable to run and limped badly. We tried a brace for over a year to stretch out her leg.Kathleen GoodspeedWhite/American%Vocational Counselor/Graduate StudentBlMy jaw sometimes remains open and is exceedingly painful and I need to physically shut my mouth with my handHHeadaches, severe body aches and exhaustion - which usually occurs with the headaches in the fall. Okay this is a wierd one. After my last surgery which was 15 months ago I broke out into a severe outbreak in my genitials. They thought it was Herpes but I have been with my husband for 5 years and with no one for 7 yeas prior. I had another one a month later and have not had one since. One test was negative one was low positive. It seems my immune system has a hard time fighting off infection after a surgey. I have had 10 surgeries and usually have a complication after each one.off and on and then progressesHard to tell - I just went to the doctor and he said that my cartlidge in my nose is being reabsorbed. It appears to progress in the fall and stop in the late winter#22 after I had my son it went crazyMy disease had stopped at the coup de sabre and when I became pregnant or after I delivered I lost the whole side of my face relatively quicklyTissue ExpanderTissue expander - unsuccessful- infection - many revisions as the disease continues to progress. Much to do with my nose. Also a lip flap. Adele LiuItalian/AmericanTeacherAMy hands are usually cold and sometimes have a tingling sensation late 30'sStress'Truthfully, I have no idea what provokes the continuing atrophy. My CT scan revealed that even my sinuses have atrophied. And I feel the atrophy is continuing. In part, that my be a factor in why a reconstructive surgeon will not perform corrective surgery. Thank you again for all your efforts in trying to understand this condition known as rombergs. I applaud you endeavors and the kindness you have shown towards me. It has been very uplifting to know there is a special doctor who cares about o God bless you!!! with grateful affection, Adele LiuKaren E.A. Smithbehaviour management specialistpain in the left side of my jaw and it has tempoararily locked on occassion .. nothing severe or long - lasting ... just enough to cause concern then disappear again!suspect: bullous lung disease last winter ... saw a specialist who determined that there was little to be concerned about... did not confirm that diagnosis. Lory BriccoWhiteRegisteres NurseMy jaw does "lock up" briefly from time to time - also, I tend to "gring" my back teeth - not while asleep, but I while I'm awake.approx 33-35 years of age6Plaquenil therapy appeared to slow progression of sx'scurrently (43years old)DRUGSLI'm no longer taking plaquenil - I suspect this is why the sx's have sped up none knownEYE$The doctor did surgery on my "good eye" (right)to make it appear more symmetrica< l to my affected eye (right) - It did make my eyes more symmetrical, but now my right eye appears to be receding again and my eyes are about as asymmetrical now as they were before I had the surgery 12 years ago. Very Mild Kathryn Large-Administrative Assistant Construction Companystarted 4 ended 4silicone implant for cheekbone - also had surgeries to remove excess tissue. Was always around 100 lbs. Now am 120 so face put on weight and sagged - bummer. Need facelift or removal - going to get second opinion - surgeon concerned about nerve damage with lipo. Very SevereCal. Mayautomotive painter Marie Winget,house wife / "Hallmark" card clerk part time Sandra ShawIrish caucasianMedical Laboratory technicianqI would rate it as moderate. My jaws crack every time I open my mouth but it's because my jaws are an uneven sizePossibly ~ 18 years old 14 years old@Probably just a growing spurt, that may have emphasised it more.One of the reasons I was given for the lack of success by the surgeon was that the site where they took the flap/graft from (on my back, same side as the affected side of my face)seemed to have smaller than expected blood vessels. Near this site I also had some vitilgo or white marking.Jennifer L Reese Homemaker6My jaw will lock up when eating, talking, and yawning.23It seemed to speed up in my late teens and then slowed down in my early twenties. We can't really associate anything specific causing the rate of proggresion to speed up or slow downgI had the surgery as a temporary solution when I was 13 years old. They suggested that I wait until adulthood before having a more permanent procedure. At 21 I found a group of docters in my area to perform reconstructive surgery, however my insurance denied coverage reasoning that it was considered cosmetic. I have since lost interest in any reconstuction.Angela Mary Sherninglocal mushroom farmcolder than most - bothJaw locks when yawning35:Eye operation - brought eye out enough to stop it wateringPatrick Ward Hindman English andTeacher and writerI have always had problems with the cold and my fingers. It takes a small amount of cold to produce painful digits. Along with this extreme discomfort comes swelling of the fingers and the loss of color. As they warm they may tingle and become red but still swollen. I developed a nonfunctioning thyroid about 7 years ago and I developed a condition where my hands swell slightly and become painful upon waking. Movement of my hands makes this condition disappear9123 N 44th AvenueGlendaleAZ85302(623) 937-5082$robert.d.cunningham@worldnet.att.net|Not so much color but I have a large dent on the top of my head and the hair on right side grows very slowly or has stopped.They are in different places like forehead, behind eye, back of head and down into neck, all on the right side. They can be debilitating; lying down, cold washcloth, pain medication help but sometimes they are really stubborn. Not covered above; I have werAll symptoms are on the right side. I frequently have burning, itching, tight skin in affected area and twitching.{My gums seem to be receding, my teeth and jaw is sensitive to hot food and drink. teeth break and get cavities, one bridge.RBottom lip halfway between center and corner and upper lip under nose, right side.,losing hair and some tissue at about center.=Right eye twitches often and focusing is difficult sometimes. Tongue is thinner on right side.I had collagen injections for a few months to improve my appearance but the fluid ran out almost as fast as they put it in....I quit going.I was knocked out a few times. Stress, heat,I have never told anyone except my wife. I'm not sure "seizure" is the correct word but I have brief moments when I see white and feel like my head is being short circuited. I can't move or talk and start to fall over. I would too except they only last a What as list! I have non symtematic asthma which is a chronic condition. Also chronic is levo scoliosis with rotation of the vertebrae, mostly in the lumbar spine. My deceased mother was afflicted with rheumatoid arthritis. I have a history of arthritis, I'm now 52, especially of the spine as well as a cyst on my spinal cord which has escaped the spinal area. I have a long history, especially through my 20s, of throat and ear infections. I still have my tonsils which were not removed in my youth because of a correlation of removed tonsils to polio. Probably the most noteworthy feature resulted from an automobile accident when I was approximately 19. I was a passenger in an automobile which struck a cow and ejected me from the vehicle. I was comatose for 5 days and to this day remember nothing about the accident. My injuries were a badly smashed right lower extremity which was encased in a plaster cast for 6-8 weeks. Some small fractures but nothing that had to b! e reduced. When ejected I lit on my head. I received a inner craniocerebral trauma (brain bruise)which left me with a loss of left upper limb coordination accompanied by hyperflexes of that limb. In addition, I was also afforded dyplopia especially to my lower and right gazes. From the age of 19 till I was about 32 years I did not have glasses. At 32 I was fitted with eyeglasses which helped considerably. My vision still suffer diplopia but the fields are closer to convergent. This has caused many problems, examples would be cervical spinal problems from holding my head canted for years. I have improved the condition over the years but it is still present. Also, I returned to college and earned my B.S. but I have had problems reading which are manifested in a reduced attention span since the accident. ***** Coincidence? I have often wondered if the head injury had anything to do with Rombergs. I didn't notice any problems till I was approximately 30-32 years of age.! My belief is that Rombergs is hereditary but is lowly heritable, low chance of expression. I also suspect there may be a trigger event(s) that allow expression. My degree is in Animal Science which by its nature is involved with genetic variation and this is supported by a variety of course work. In other words I know enough to be dangerous!! That is about that. Any questions. I'm here. Thank you very much for your commitment to this project. As a "victim" of this malady I would like to express my heartfelt appreciation. Godspeed. Pat Hindman.oI do believe that weight gain or loss (gain in my case) makes a big difference to the appearance of the atrophy Yvonne McLaneCaucasian - American IndianHalf American IndianReal Estate SalesI have had to recently be treated for my left jaw locking. I first went to my primary care physician and he could not do anything for me so I was treated by a Chiropracter. He unlocked my jaw and relieved the pain.This begins when I was 14 - had surgery at 16 for scleroderma en coup de sabre. A period of approximately 5 year of seizures in my 30's - hystrorectomy for hardened uterus when I was 37 - scarring of my cornea - and arthritis in several joints.HMassive injections of B-12 directly into affected area - scalp, forehead-I take only daily doses of vitamins and herbsExcision of coup de sabreremoval of scleroidal section of scalp on left side - 14 yrs old removal of hardened appendix - 35 years old removal of hardened uterus - 37 years oldThis has been an ongoing struggle all my life. Believed to be triggered by severe trauma to area of head where scleraderma first appeared.Mary Diane Sprayberry united States\I have always had cood hads-I have carpul tunel and sonetimes my hands turn blu-black color.my left side(face-leg-foot-arm and hand has gone numb and my right foot also. no medical reason yhat the dr's can findi have high blood pressure-controled with medicationAfter birth of first child Jayne MessiasMild atrophy to left cheek, no further sign since derma fat graft but new atrophy has begun in my hairline over last year ( just above my coupe de sabre )ederma fat graft, donor site lower abdo, fat injections post to tidy up a few depressions aro< und graft Shawn FoxWhite/Caucasian$Front Office Assistant/Dental OfficeMy hands do get very cold all the time. It seems like if I am sitting for a small period of time, they get that way, they also turn red, or sometimes a yellowish tint.Yes, my loss of hearing in my left ear. The Iritis this past winter kind of made me wonder where I got that from. I had Iritis in my Left eye. I also have a slight asthigmatism in my left eye. Sometimes,my left eye twitches, my right one does not.I was about 17 or 18My doctor said it should stop when my face stops growing, and I had my surgery when I was 18, it had seemed to have stopped at that pointSIt seems to me the atrophy on the right side of my face did not happen at the same time the coup de sabre occurred. I think the facial atrophy, while much slower, happened about 15 years prior to the appearance of the coup de sabre. NOTE: Not being perfectly observant, my male pattern baldness may have made the coup de sabre more obvious Ines Brahami don't like this questionstudentPosit's incredible that you mention this: in fact: i've always sufferd from very very cold hands and the nails turn into a blue color: and people always retire their hands when they shake mijne!!15EXCISONthe doctors hed sliced a piece of my chin to make it seem more symmetrical and then in an other operation they've injected fat: but the results are not very concluding, and also i have to have another operation to reinject fat.Sylvie Adele HalseyEnglish School girl(My mother suffers from Raynaud's diseasenDaunes syndrome (hope the spelling is correct) Constant runny nose as an infant leading to removal of adenoidsSomewhat_successfulAndrea Bodenberg German/French/Pennsylvania Dutch Event PlannerQusually my hands and feet are colder than anyone elses. especially in the summer.jaw was too small for my teeth. had to have braces because of buck teeth and many teeth pulled because my jaw was too small for all my teeth. even had my lower wisdom teeth out at the age of seven.fourteen{the doctor that i have been seeing said that the disease's course usually runs about ten years. mine, however, took twelve.JAW BONWnthe second surgery was to shave down my jaw bone (actually my rib) because it hadn't rounded off within a yearNicholas RossyLebaneseStudentJust to let you know, I am filling this in for my 14 year old son, Nicholas. He was fortunate in that the coup de sabre seemed to stop on its own. He is undergoing treatment to repair the damage thru a series of fat injections, and with a cream to remove some of the color. But, he never took antibiotics, or anything else of that nature. He also had some laser treatments to lighten the area. Now its a question of filling in the area.10Depending on this last injection, the doctor may remove some additional fat and inject more, as he is not convinced artificial injections will be more successfu. Ann DundonBRITISHADMINISTRATOR/SALESYEARS AGO I NOTICED MY HANDS WOULD WRINKLE UP LIKE VERY OLD HANDS THEN GO NORMAL WHEN I WAS YOUNGER. MY FINGERS ACHE SOMETIMES AND YES HAVE FELT COLD OFF AND ON EVEN IN THE SUMMER. I HAVE ALSO EXPERIENCE NUMBNESS IN THE HANDSrI HAVE ALWAYS HAD THE JAW PROBLEM. MY PLASTIC SURGEON HAD SAID THE JAW IS NOT CONNECTED AT ALL. I KNOW IT IS. IT CAN BE VERY PAINFUL AND WORSE WHEN I AM STRESSED OUT. I CLENCH MY TEETH A LOT THIS DOES NOT HELP. THE INSIDE OF MY MOUTH IS DIFFERENT FROM THE NORMAL SIDE. GUMS AND THE TEETH ARE MUCH THICKER ON THE AFFECTED SIDE. I HAVE A HOLE IN THE ROOF OF MY MOUTH ALSO.EYES, STOMACH, PAINFUL JOINTS, BACK PROBLEMS, HEADACHES, NECK PROBLEMS, DEPRESSION (ALL IN THE MIND OF COURSE, ACCORDING TO THE DOCTORS). NOT REALLYMY ATROPHY SEEMED TO HAVE STOPPED BEFORE I HAD ANY OPERATIONS. (BEFORE 37 YEARS OF AGE) AFTER THE 3RD OPERATION THE ATROPHY CAME BACK, THIS TIME AROUND THE EYE SOCKET, TEMPLE,MOUTH AND ITS SEEMS LIKE THE SIDE OF MY HEAD AS WELL. I AM NOW 44 AND HAVING WORSE EYE PROBLEMS AND HEADACHES MY EYE IS DETERIATING RAPIDLY. I HAVE DOUBLE VISION NOW AND I AM JUST WAITING FOR THE LOSS OF VISION IN THE EYE. THIS HAS BEEN CONFIRMED BY THE WALTON EYE CENTRE IN LIVERPOOL./AFTER HAVING THE OPERATIONS I AM SOMEWHAT MISTIFIED AS TO WHETHER WHAT PAIN IS DUE TO THE PROCEEDURE OR THE ONGOING ATROPHY. I STILL HAVE A LOT OF PAIN IN THE FACE. I DO NOT KNOW IF THE ATROPHY IS ACTUALLY EATING THE MUSCLE IMPLANT UNDERNEATH AS THE AFFECTED SIDE OF MY FACE IS STILL NOTICABLY SSWOLLEN.Deborah Mitchell2Australia - Irish, Welsh, English, French, SpanishPublic ServantQuite severe spasms from 12 to 40+ - haven't had one for a while now (I am 46). Mouth used to snap shut with no warning - I often bit the inside of my cheek or tongue - very painful 'knotted muscle' at temple on my affected side - and I couldn't open my mouth for ages. I have fractured my teeth on that side as a result. I cant open my mouth very widely, for an extended period - have trouble at the dentists.certifed nursing assistant%My hands get blotchy when there cold.)I've had a silicone implant under my eye.)Kiara Higgins Mother Colleen doing surveyaustralia and englishCoeliac disease4gTreatment seems to have halted most of kiaras atrophy but as she is growing it is hard to tell how muchSylvia Hajdukovic Slovenian housewifeHands and feet very cold*Cant open wide extrodinary pain in the jaw!Right breast as mentioned earlierElectronic treatmentssecond pregnancy tissue graft Kristi DavisfrenchadministrativeHMy hands (and usually my feet) are always cold, even when it's warm out.I get pain in my jaw.26-27?I answered no to most of the questions above, but I'm not sure if it has slowed down or actually stopped. Since it hit so quickly and deteriorated so fast, I'm not sure that it has stopped altogether.I had a new type of implant put in. I'm afraid I don't remember the name of it right now. My doctor had a CT done of my skull, then created implants that he thought would fill the "holes" best. Deepa Jacob christian)urinery infections and menstral disordersVictoria NorrellHelpline workerfWhen I get stressed or tired I find I am unable to fully close my jaw. It hasn't happened for 6 monthsmI have (although now much improved) - suffered with a very low /weak immune system and always used to be illPLASTIC>Plastic graft to forehead to even out depression on right side Janet TaylorContract SpecialistrI have one very small, quarter size, patch of skin without pigment on my right elbow, but I have always had thatn.&Once or twice I have had my jaws lock.strabismus suergery3my eye looks better, but I still have double visionBonnie F. Keenum2White American with some Cherokee Indian ancestors&Adm. Manager in Construction - Retired-I had a plastic surgeon who felt it was safer and more feasible to make the healthy side look more similar to the unhealthy side. He did a complete facelift and took fat away from the healthy eye lid to give more of an even appearance. So it was a cut from ear to ear and then reattached and stitched.I still have a fairly flat dent on my left cheek where all I see is bone. Skin is very thin on that cheek bone. Left eye is more sunken than right eye. Clare Flaxmanenglish bookkeeperlMy mouth doesn't open very far .... the jaw doesn't stretch much. also my lower right teeth are falling out.gI am on medicine for depression. Last year my 46 year old husband died. we were married for two months.about 35 perhaps.'being pregnant I feel really sped it upi noticed the most change after I got married at 16 and had my daughter also at 16 I had another daughter at 18 and a son at 21. the changes have been very gradual, but it is durring these last few years I've noticed the largest change.Jbiopsy of my right eye lid at age 3 to determine why my lashes fell out- scar tissue was found. but cause for loss was not determined. at age 12 I had reconstructive surgery of the lid to close the gap. (the center lashes fell out- or 1/3 total lashes) the gap did not remain closed and pulled apar< t with in 6 months after surgey.Lauralee Pasko$white (western european and spanish)information technologyI've been diagnosed with a mild case of Raynaud's. My hands, feet and nose are always cold and become purple and numb in cold weather. Recently, after exercising in the cold rain, my right index finger and like right toe started to ache and I experienced At times of stress ie bereavement, house move, I experience pain in the areas affected on my l.h side of face. Could this be a trigger?Amber Lekay Covinwhite - caucasionbeing a 4 year old kidyI can not tell at this point what Amber's atrophy is doing. I do not see any visible differences than when she was three. Karen Feutz$1/2 Hungarian, 1/4 Irish, 1/4 GermanAdministrative AsstWhen I lived in the Midwestern portion of the U.S., Chicago, I always had cold hands and feet. I live in Arizona now and, at my age of 52, NOTHING is cold. Ha HaSometimes, it seems like the left-side of my face/jaw gets "stuck" i.e. if I yawn or when I chew something hard, it feels like it sticks. But I've never been unable to fully open or close my mouth.SI have not been diagnosed but I think I have fibromyalgia. Everyday, my bones and my muscles ache. I have quite a bit of pain in the back of my neck, my wrists, my knees, my elbows; all the joints. I was tested for rheumatoid arthritis several years ago but my doctor said I did not have it. If I sit for a while, I have a hard time getting up; pain in lower back and knees. If I walk for a long time, my lower back, knees etc. all hurt. I have pain every day. I believe there is a connection betweeme are adults who should know better. Some adult strangers are rude enough to actually say, "you shouldn't be allowed out of the house looking like that. What's wrong with you?". Some feeble minded adult actually said that to me about 2 years ago. Let me just say my response was less than ladylike. I still get upset about having this stupid syndrome. Late teens,Just seemed to stop as quickly as it startedIt seems that the onset was at about age 9 and it stopped by age 16 or so. I started having surgery at age 14 so I don't know if that stopped the progress.Had silicone injections with a silicone implant to take the place of the unsuccessful bone implat for left cheekbone. Silicone implant still in place and good.I had a series of silicone injections in 1982 consisting of between 50 - 100 injections each during 6 separate treatment dates. Initially I was elated at the results. I looked the closest to normal that I ever did. Now, I have a slight concave spot on left cheek and left side of mouth seems to be looking crooked again. However, the silicone implant for my cheekbone is great. Still in place and looks good. Dianne Lennox New ZealanderNursekThey seem colder than most people's, my feet suffer from the same problem. No colour changes have been seen]I do have diverticulitis. Apart from one acute attack, it has not really caused any problems.13-14 Robert ClarkeBorn England, Parents JamaicanAfrican American$Financial Planner/Investment Advisor&I have muscle spasms from time to timeDonn CammarataJHalf Italian, Irish,English, scottish,Dutch...A tiny bit of American indiaI have had some bowel problems. Mainly soft stools and I used to have alot of urgent diarhea before changing my eating habits. I had a colonoscopy and the doctor said everything looked fine. As far as the eyes, I have alot of skin problems, mainly in the colder months..My eyes will burn and itch. Then they will swell, eventually peel and flake. I have had the skin problems off and on for about 20 years. The cold weather now is really tough on my skin. My skin and lips crack and have a general feeling of having very tight skin on my face.^Only the appearence of my chin now.............it is about a 1/4 inch higher on the left side.Segmental nephritis as a teenager. Tonsilectomy as a child. Inguinal Hernia surgury within the last yr and a half. I fell on the back of my head as a child, suffered a concusion=I was recently diagnosed and have not looked into surgery yet Corey Lemoinefrench- Canadian European Jew0Gpossibly methotrexate injections ??? don't know if it would have anyway7Dianewhitestay at home momFor years I have noticed that my hands were always cold and would kind of look blue or purplish as well as certain parts of my face and lips when it was cold out. My one friend used to call me a smurf.I have spine scoliosis,my left eye is slightly crossed but can control it(lazy eye) My vision in the left is 20/100 my right is 20/20 ans slightly far sighted. I don't have eyelashes on the bottom of my right eye.aI had fat injected in my face taken from my stomach. It was fairly successful although only about 15% stayed and the rest was absorbed. I was going to have reconstructive sergury but found out I was pregnant and decided to forget it.I did have collegen injections before I knew what I had. It was unsuccessful because it totally absorbed within a month. Jodi QuelleCourt ReporterCurrently, my jaw is constantly aching. I often open and shut my mouth just to relieve the tightness. As far as "lock jaw", only when I was 16 (1986) did I have an episode of something similar. I had a terribly high fever and was very sick and my jaw just locked shut. The doctor broke a tongue depressor trying to pry it open. He didn't know what was causing it. I went home and it just went away in a couple days. I don't know if that is relevant. In fact, I forgot about it until your question.Ever since birth, I was constantly ill with tonsillitis and colds, often losing my voice for all of winter. Finally, in 1995, I had my tonsils removed and have been fine since. In 1997, I went to the doctor for numbness in my feet. They had scheduled me for testing but I did not keep the appointments. I quit smoking and the numbness is not as severe as it was. The numbness is just now periodically when it is extremely cold.(Relatives medical condition tell me more Head injuryHead injury tell me moreHead injury tell me more2TriggerTrigger classificationTrigger tell me more Lyme diseaseLyme disease tell me moreAnything else I need to knowAnything else I need to know 2Problems with ethicsQueries)Have you emailed patient about this queryHas the query been resolvedSpecific Query from patient?Details of Query'Replied to specific query from patient?Details - what saidGeneral Email reply sent?Lisandro de la Torre 2417 BerazateguiBA Argentina1884 11-4256-1546ferpuebla@ciudad.com.arMaleRight Skin ChangesFacial assimetry started becoming evident in me when i was 6 years old; my mom was the first one to find out while looking at some photographsLowerBrownThe affected half of my face usuallu hurts; i can feel it in my bones; my teeth and jaw usually hurt too. I haven't been to a doctor regarding those painsOn the affected side, my teeth have not fully developed until late age. Most of my "milky" teeth from that side had to be pulled out by a dentist, as they did not get as much use as the ones on the other side (I chew on the healthy side only) The lack of.muscular tissue on that side made it impossibleto carry on with the natural procedure of the mouth's self cleaning process which consists of having the internal walls of the cheeks rubbing teeth(as we talk) to obliterate the remains of food particles.QThe ends of my lips on the right side are thinner than the ends on the left side.Jaw spasms take place from time to time and they are very painful. I guess it's a muscular contraction from some muscle in the area of the throat.They usually happen when i go somewhere it's very cold or with hot/cold temnparture clashes. I believe that they are also related to nervous situations.General ThanksSydneyNew South Wales Australia/It's not surgical but a procedure (x3) whereby restylane and perlane products have been injected into the affected / depressed area under local anaesthetic. I think this has been good for me as mine is only a soft ti< ssue problem ie bone is fine. We don't know how long these products will hold, however. Kyla MeyerGerman, Turkish, AfricanFI am thin and have always been told it is from inefficient circulationFnot exactly but ove the years I am able to open my mouth less and less#anorexia nervosa, sinus infections,25sI don't know if it's related but the syptoms seemed to speed up during a time of unrelated extreme emotional stressAdrienne WilsonNew Zealand Maori/Pakeha/only when iget very cold legs, hands get purple>sometimes if i am chewing gum it locks up and also feel spasms(no,most damage was done in earlier yearsUi am thinking of micro-surgery, i have saw many people do very well with this surgeryKaren Hamiltonit could have been the pregnancies or maybe it was the timing of having it for so long and it had just about burned itself out i am not sure.bi had a silicone prothesis inserted but i had it removed later because it looked and felt strange. Mary E. Lydon Mostly IrishcookThe first time I diagnosed way back in 1976, the plastic surgeon had me see an opthalmologist, he told me that I had debris in my right eye. He gave me steroid drops, never saw him again. When I was 30, 11 years later, I needed to wear glasses, my eye doctor said that there was damage to my optic nerve. I was never able to find the first doctor to compare records. My doctor has monitored my eyesight carefully for 17 years, with bi-annual field of vision tests, and exams, and is satisfied that it was a one time "occurence".OOccasionally the muscles under my jaw will cramp, it is just a momentary thing.oI had two grand mal seizures when I was 44. I mistakenly called them petit mal on the first part of the survey.hThe atrophy seemed to occur almost overnight when I was 15, it has not changed significantly since then.I recieved 11cc of liquid silicone in my cheek and chin in 1974. Dr. Joseph Murray of Peter Bent Brigham Hospital in Boston MA (now known as Brigham and Womens Hospital), was participating in a goverment sanctioned test on silicone injections. He was the first person to put a name to the hemi-facial atrophy "Romberg Syndrome". He won a Nobel Prize for medicine in the early 90's,I believe for his pioneer work in kidney transplantation. The last I heard was that he was teaching at Harvard, he coud be retired . From what I learned from Dr. Murray was that I was very fortunate that the silicone did not migrate or cause any other problems. There was no further study.Siomara M. LagunaCentral AmericanPreschool Teacher/Student;My hands are always cold. They are never clammy, just cold.`I had reconstructive surgery, so I am not sure if it ever slowed down because I have an implant.19(I have had cranial reconstruction and around the orbit of the eye. The first surgery was not successful because the orbit made my eye shift and made my eye look worse than before. I have also had to have eyelid surgery because there was too much scar tissue so my eye was not able to fully close.Serene Oh Hwei FernCHINESEChineseNURSE-HAVE SWEATY PALMS(NOT SEVERE), AND COLD HANDSFEEL TIGHTNESS OF THE LEFT JAW. SOMETIMES WHEN I OPEN MY MOUTH, I CAN FEEL THE JAW MOVING UP AND DOWN (MECHANICALLY). COULD NOT OPEN MY MOUTH BUT RELIEVE AFTER TAKING PHENYTOIN AND ANAREXI'm Serene Oh from Singapore. I think I've missed out something which may or may not be relevant. I had a lipoma removed in late 1997. It's located near my right scapular. Guess that's about all. Really hope to hear from you soon.I DON'T SEE THE SPEEDING OR STOPPING, BUT I OBSERVED THAT I'VE INCREASING HEADACHE AND TIGHTNESS OF MY JAW WHEN I'M STRESS, OR EMOTIONALLY CHARGED, OR SMILE/LAUGH EXCESSIVELY Natalie BruHispanicSales AssociatePThese type of surgery only lasted a couple of months, now my symptoms are worse. Mary Camp*Stay at home Mother, formally a journalistSometimes I find it difficult to chew on the left side. This is not due to pain or stiffness but just a general lack of strength/mobility.13 or 14.Onset of menstruation and reaching full growthlate 20sI believe pregnancy reactivated the atrophy, but am not absolutely certain of that, because the area affected (chin) had fat grafts in the 1970s and it has also occurred to me that what I am seeing is a deterioration of those grafts and a reverting back to the way it was, rather than more atrophy. Thus far there have been no new areas of atrophy, nor have other existing areas gotten worse Diana MannCockneyGarden DesignerCan't open mouth very wideProper Iritis - goes to Moorfield. Depression after parents died (not to do with face). Gallbladder, Hysterectomy, general ill health (seems unrelated)11Didn't notice anythingRight ear stuck out (pinned back). Tried to alter shape of eye in one operation. Arm to face pedicle in 20's. More embarassed by arm and abdominal scars. Rhinoplasty x 3Patricia Del MercadoRegistered NurseSLight malocclusionLPolymyositis resulting from an anti-depressant "Serzone" Anxiety. Scoliosis.GORE TEX#gore-tex implant and cheek implantsKathy S. McCormickIrish AmericanNuclear Medicine TechnologistI tend to be cold all over. I have plenty of "padding" (I'm overweight), but I still seem to always be cold. Occasionally when I get extremely cold extremities, my hands seem to appear whiteI've had TMJ. On occasions when I yawn, my jaw would lock open. I have since learned to yawn "off center" to avoid having my jaw lock.I have very severe allergies to mold, fungus, dust, smoke, pollen, grass and trees - - - mostly mother nature. I've been treated with oral meds (currently 10mg QD Zyrtec and started taking allergy shot 1 year ago. My allergist, Dr. Gailen Marshall, said he did not believe the shots would contribute to any of the processes that PRS encompass, but that since he had never given allergy shots to someone with PRS, I'd be a first. Since starting the shots, I have not noticed and appreciable difference in my condition or the progression pace of it. My PRS is relatively mild and does not involve the heurological problems of epilepsy or migraines commonly associated with PRS.It seems as though I did not develop PRS until I was about 40 to 41 years old. It seems to have progressed (very slowly) since then and since it is slow, I can not tell if the Plaquenil has made any difference. Rita Bietry"American born, parents from PolandMedical office nurseCfingers and toes become cold and numb quite easily when not active.The jaw will become lodged in a certain position. This does not happen often but it does happen suddenly. I have learned to just relax myself and my jaw and it will relax the muscles.Ii suffer from headaches both sinus, tension and migraine. It seems I have a headache of some degree every day. Most of them are treatable with sinus medicine and motrin. Occassionaly the migraine needs Medrin.I also have a sensitivity to flickering lights. It almost feels like it could cause a seizure, but I have never had one. 40 years old 32years oldzIt started after my second pregnancy. I noticed a darking spot on my right eye develop before the facial changes occurred.I had one fat implant operation that was somewhat successful except that the implant 'took' a little off the mark. I have also had two auto fat injections that did not last very long at all. The fat was reabsorbed quite rapidly.Elizabeth Taylorenglish/scottishcustomer service repabout 6 or 7 i thinkTammie D. Stammers early 20's Nicole TullyIrish, Scottish0Severe sinus infections on affected side of face Susan EmeryACaucasian (both parents & all grandparents etc. are from England)Call Centre managerMy toes often loose their feeling and go purple or extremely white (like there is no blood getting to them). Both my GP and accupuncturist said I have Raynauds phenomenon / disease in a mild form (I believe this is the loss of circulation to extremities. I checked yes to depression because I have taken anti depressants in the past. I had an eating disorder in high school and it was treated with ant< i depressantsfI get really sore spots at the angel my jaw opens and closes. Sometimes so sore I can't even touch it.early 30's. I am now 37OP ON GOOD SIDEA couple of times in my early twenties I had what was thought to be a TMJ dysfunction. I clinch my teeth now. Also, I appear to have somewhat short root structure of my teeth on radiographs.Theresa Hildebrand"American of Irish & German descent Library ClerkJon, this is a tough question because it is hard to tell whether facial changes take place because of the natural aging process or from the atropy advancing.Janette NorrisAustralian-White8Petit mal when I was younger. Also I suffer from excma. 16 years old 12 years oldSI had to have artificial bone inserted as my skull was thin in parts due to RombergPam Kerr (for Nikki)yvonne demarinofrench/italian/american indianplant pathologistKNo color change, but I am often cold in my extremities, feet hands and nose`As a preteen I experienced a time (weeks) when I had joint pains and woke up sore. I went to a doctor at that time, but no diagnosis was made. If I get sick (which is infrequent) it seems to settle in my chest. I used to smoke and had bronchitis. I was told if I didn't quit I'd have chronic bronchitis, so I quit . I am told I have heart palpitations.&Finnish-from mother Syrian-from father Half syrianHRemodel Houses and attending college, in hopes of an architecture degree13I wasn't taking part in any treatment because at the time there was none known. At least according to the doctors at the Mayo clinic in Houston Texas Nicola Wyatt Housewifemaybe about 16 years old&Maybe the contraceptibe combined pill?26After childbirth possibly when hormones are settling back into routine. When not on the pill. Noticed a dentation in my cheek bone area so went back on pill (and now fingers crossed) seems to have stopped.eRight eye has sunken into the skull Have to wear glasses to level off the eye vision sensitive to sunCRight side of tongue has deteriorated and l cant poke out my tongueMy jaw locks all the time and l cant open my mouth I had excruciating pain in the jaw and the right temple but not so much now after all the electrolic treatmentMy right breast is giving me alot of pain and the doctors say it has to do with the Rombergs Mamogram showed something there but they dont know what it isEvery X-Ray possible BiopsyL was I was 7mths pregnat at the time and l had a very stressful day and the overnight it happened the changes to my face first the lip and then 2weeks later my chin just pucked up overnight agianMy jaw locks all the time and l cant open my mouth I had excruciating pain in the jaw and the right temple but not so much now after all the electrolic treatment My right breast is giving me alot of pain and the doctors say it has to do with the Rombergs 8/13 Parmenter AvenueCorrimal2518 61 2 42845738vicki.l.noble@bhpbilliton.comThe headaches start above my right eye and move through the 'sabre' mark on my forhead to the crown of my head and radiate to the side, almost to my right ear.Initially a neurologist thought they were the result of neuralgia from two surgeries as they seemed to occur more in the colder months. However, stress and lifestyle have a HUGE effect therefore I have a greater incidence when I am unhealthy. I seem to beI have constant pain in my right jaw. I am constantly seeing my dentist as I have a particular tooth that always aches and following xrays there is never a problem with the tooth.dDentists and neurologist have said it is neuralgia from Rombergs or the surgeries I have undertaken.As above. My teeth also 'swing' slightly to the right side and the dentist has advised that even if I were to brace them for a period, they would probably swing back to being uneven again.As I am now 46 years, I am starting to see some wrinkles and the right side of my mouth (top lip) has become very wrinkly with deep grooves.The 'sabre' extends from within the hairline down the forehead, down around and under the right eye. Where the mark goes, no hair grows, therefore, my right eyebrow is a bit patchy.My right eye is extremely sensitive. I have a terigium (cannot spell) on the right eye and need to wear glasses for reading as my right eye is constantly strained and red. Sometimes I get pain in the right eye with nerve twitches for the complete day.uI have a 1 cm piece taken from my face (right side near ear) for analysis (25 years ago). Many, many medications etc.Possibly puberty Jocelyn Clark Toowoomba435046308290jmclark1@bigpond.com.au Eye problemsGreendNot so much the colour but texture. The left side is courser and thicker and the right is fine hair.Scary especially when young. The onset was sudden. They weren't the most serious ones but enough to give me a headache when coming to.Leg!Dilantin, Tegretol and Phenobarb.nAfter I started eating and drinking Milo I get flashing coloured lights but not necessarily with the headache.hMy doctors have never heard of my condition - especially at Med school. They just did not know about it.My left side of my face was shorter which made my right middle tooth look more as though it was in the middle of my mouth. Boy did I get criticized for that. I still have a baby tooth left on the left side down the bottom. It is a very strong tooth.%My mouth is shorter on the left side.[Shorter on the left side, and particularly sensitive to pluck my eyebrows on the left side.sMy left eye was affected and not developed properly especially the connections at the back of the eye to the retinaLet's see, where do I start. Allergies is first and foremost. I have seen and opthamologist because of a pseudo tumor behind my left eye. (The affected side) I also had a problem earlier this year due to many headaches. For the most part, I get sick really easy. If there's a cold or flu going around, I'm usually the first among my family and friends to get it. I have also been experiencing some problems with my throat lately. Over 5 weeks ago, I was diagnosed with throat infection/ tonsalitis. It has not disappeared. I have seen three different doctors concerning this. At no particular time of the day. My throat will start to swell. It's a nusiance.Doctors have given me antibiotics, and are currently doing blood work to check for mono. around 19JPossibly stress, I had just left college and took on a 40 hour a week job.Jo-Ann D'AngeloItalian American%International Compensation Specialist"I did see a US recognized immunologist who had a interest in Parry Rombergs and she did extensive blood work. She explained that my blood work showed signs of immunologic disorders but not enough that I would be fully diagnosed with one. I usually have a positive ANA; however, it may be a false positive. Double vision: Rombergs effected the eye muscles in my left eye and as a result I had double vision which was corrected with surgery. I also had a filtering bleb in my left eye. Eye fluid filter through the bleb and consequently the pressure dropped to 5. An eye surgeon performed a scleral graft to cover the bleb and the eye was saved and the pressure restored. I have just found out now that I have monocular double vision; meaning double vision from one eye only. Of course it is my left eye.21RIt may have gotten worse during a pregnancy but I honestly cannot say for certain. Pam UnReinLegal SecretaryI was diagnoised with Raynauds phen. about one year and extreme tiredness before the fat on the right side of my face almost totally disappeared.I would get muscle spasms under the right jaw since I was 16 years old and I still have them on occasion, I am 39. When the muscle would relax the jaw would not feel so tight, it would come on when yawning widely or sometimes chewing foods._At age 8 I had an ulcer, 11-colitis, at 15-I had a fatty tumor (benign) removed from the left side of my chin, almost immediately after that surgery the rt. side of my chin did not look right, I went through 2 more surgeries from a plastic surgeon at age 15 & 16 to try to repai< r the rt. side of the chin, they thought during the initial tumor removal that too much fat was taken out of the rt. side. This did not correct the problem and the surgeons thought that they were starting to damage the nerves around my mouth because I could not smile correctly. That was when the discoloration (bluish tint) showed up on the right jaw line, I lost small areas of hair on the rt. side of skull, that have not totally filled back in yet and the rt. side of my face started to change gradually. I had two boys at 19 & 21, then the fat in rt. side of face had totally disappeared, I have had 15 surgeries to replace tissue by fat injections from donor sites in thighs and butt area. My right eye has receded and has caused blurry and double vision which has bothered my in the past 5 years, I have a colloid nodule on the rt side of my thyroid, but I am not going to have it removed unless I absolutly have too because I am afraid it my reactivate the Rombergs on the right side of my face, I have lost the fat tissue on my right 3 middle toes and my rt calf is smaller than the left.not really, because the face changes so much from intake of salt to hormores that unless it is a major change it is hard to tellafter the birth of my second child and I had lost the birth weight, the fat on rt. side of face disappeared also, I am 5-4 and weight 98 lbs after the birth of my sons I weight maybe 95 lbs.not that I know of Alopesia on the top of his head.Chest7is also colour blind but so is his maternal grandfatherhis teeth have not been affected but he could use some orthodontic work. I am afraid to have the work done in case it makes his condition worse.Smoking seems to exacerbate the problems and sensations. I quite smoking and may smoke just one occasionally when stressed. I run faithfully and lift weights and do toning exercises with some Yoga and sports. That seems to help a great deal as far as the sensations in my face. It relaxes me. Although, I have to watch my weight because I lose weight easily and that makes the sunken cheek more noticable. I have noticed that being in a high-stress work environment causes a lot of sensations in my face also as far as tightening. I don't know if it speeds it up or not. I notice that my cheek looks more sunken in on days when the sensations are greatest.My operations were unrelated to this disease. I just found out about this disease only 22 days ago and did not realize there were even courses of therapy, treatment or surgical procedures available. I have just begun my research regarding this.Michel Laetitiafrancaise (europeenne) infirmiere@my fingers are becoming white (sometimes red) when its very cold30:the stress (I was doing examens when it comes on the face)Madeleine de Rauville-Raal=White South African (English mother and South African father)%Advertising / Full time mother of twoWhen my PRS was at its worst (in and around 1987 when I was 20 years of age), I would have muscle spasms/cramps in my jaw. My jaw would lock in a terribly painful muscular spasm (the muscles along the jaw and the whole cheek area would seem to lock/knot into a tight hard painful ball). This is in fact the first sign that something was wrong. When I bit into my dinner, my jaw stayed shut / my teeth stayed together and I had to really force it open again.8No - nothing else - otherwise perfectly healthy and well!28 (10 years after it had started,No, but it was at its worst from 1987 - 1990]No - to me it just had to run its natural course. Nothing helped speed it up or slow it down. RESTYLANE313 and then started again at 15 stopped again at 17V3E 1C2emilydec31@hotmail.com*The right side of my face began to AtrophySometimes they cause me to vomit, When I began to show signs of the migraine I need to be in a dark quiet place. I did however smoke for yrs and since I have quit smoking due to pregnancy, the migraines have stopped. I was prescribed Tylenol 3, but I do nSlight diff in my smile.A second cousin has been diagnosed with Scleroderma. They are no other records of anyone else in my family other than her and I.Possible, When I was born I was delivered with forceps. I had a black mark down the right side of my face. My mother also noticed over my toddler yrs that I had a lazy right eye.My jaw does not open very far and if made to at the denist office then it is very painful and the pain will last for days. Chewing gum also can hurt my jawI think I listed everything on the last page because I do not know what is relevant and what is not. I just wanted to say for the last question on rating my face. I rated it severebecause of what I looked like as a child. The surgeries have helped some and I would say that I look pretty good now but the degeneration is continuing to the point where it is probably going to look severe again before too long. I do use coverup makeup that can hide some of it, but for how long who knows.Stopping the pain seems to help it some but I cannot really say that it has stopped or slowed down because the degeneration has been ocurring my whole life, even after the reconstructive surgery my face has always been doing this.$as a toddler and around 29 years oldYes pain seems to make it speed up. I was told as a child that I probably could not have children and so far I have never gotten pregnant.All I can think of is that when I was younger I did smoke some pot and I tried cocaine and it seemed to make it worse. I am embarrassed to admit this but I figure you should know all. But yet I do have to say that smoking the pot did help with the pain, but my career is not worth it. :)I had an inguinal hernia as a child but I do not think that was relevant to this. I did refuse the silicone injections as a child. I am glad now because of the ramifications it has had on others. I was also offered the bone graft but turned that down. I looked pretty hideous after the surgeries and had had enough. These surgeries were done in the sixties and were experimental at the time. Tell you the truth the way I have been treated by doctors throughout my life I have come to fear them to a degree.I do not have health insurance right now and have not for years and the cost of the care I have received has been tremedous. I have been unable to work for several years due to the pain and yet so far I have not really found any doctor that has been of any real help. I hope to get back to work soon maybe then I can get some coverage for medical care. When I was a child my parents had to sue the insurance company to get the surgery done.Kathleen CliftMother- French / Father-German-Owner/Vice President - Transportation CompanyMy jaw has locked peiodically since I was about 10 years old. I still can not open my mouth wide enough to eat apples or a hamburger. I had braces on my teeth from the time I was 12 until I was 14. This seemed to escalate the jaw problem. Several times my orthodontist injected some kind of relaxant into the inside of my jaw in order to get my mouth to stay closed. I was told I have TMJ.}Xrays showed that part of the bone on the right side of my chin was missing when I was 16 years old. I have Stenosis - L4 L5. 18 years oldlStress seemed to make it speed up. I had 5 stressful pregnancies and started my own business. Lots of stress(The silicone injections changed and damaged some of my features and the operations made me look better. The fat from the injections dissolved within 6 months. I am very lucky. Makeup covers up most of my faults. My PRS seems to be very mild compared to others I have met with it. I am very lucky. Nickie Snow CaucasionTV News producerAfter my first reconstructive surgery my jaw started to crack when I opened it too wide but is it better now. I only get lock jaw during times of stress.I have patches of numbness all over my body--predominantly on the right side but a few little spots on the left side. I have one large chunck of numbness on my upper right thigh. In the areas of numbness, no body hair grows.%I believed it stopped around 23 or 24,it rapidly sped up 18-22yrs and then stopped< 3I can't be sure, but I partied a lot in college and that's when the atrophy really began to become pronounced. I lost about 30 lbs and drank college levels (that's a lot) of alcohol. Some how I think that the alcohol and lack of sleep contributed to poor circulation which may have aggrivated the situation.,Liz Taylor (from USA) - not elizabeth taylor#swedish, scottish, egyptian, french6research coordinator, dietitian, exercise physiologistin the winter only, cold handsCused to spasm and stay locked, would have to wait and then pry open:i don't think it ever stopped with me, just keeps going onYinitially the fat graft worked well but since the disease continued it ate up all the fatL. Kelly Irish/ German 6-7 years oldThe Romberg's stopped or seemed to stop for about 5 years. But we are not sure beacause it is a very mild case and very slow moving. just before it restarted my daughter hit her chin a couple times by falling. She is a dancer.Denise H.W. Eisenbergstudent w/ part time job"At one poit, i had been really stressed and uptight while in a fight with a family member and my right arm began to shake or spasm. It didnt last long. We went to a neurologist and he said in extreme cases that can happen to any one. But in any case we were worried so we went to the doctorin the same surgery as the fat graph i had an implant put in. my mother and i arent sure exactly what it is called but it is artificail and the name of it has 3 letters and it starts with an "H".today is January 15, you recently called me to finish this half of the survey. i had my 1st and only (so far) surgery on Oct24 or 25. i had a fat graph from my abdomen to my middle cheek and the implant implanted inmy upper cheek to replace my cheek bone. a lt of the fat has reabsorbed but it is significantly better. If would be so kind as to send me a copy of the results of the survey when it is completed. thank you so very much!!!Amanda Bolinger;getting a volleyball spiked right in my face at close rangemigraines - run in father's side of family vision oddities - I've got "blind spots"(grey spots) in about the same areas in both eyes (1 in each eye). I've had all kinds of tests done but they don't seem to think it's related to the Romberg's. The speciali23 rue de calvasnimesFrance3000004 66 27 05 47aljela1@libertysurf.frFis there any link with vaccination hepatite B (I had 10 injections...)21 rue de la cte Hrimoncourt 03.81.30.93.15.//06.12.41.92.41.del-torchio@voila.frprogressive Facial Hemiatrophy"Above refers to a 'tetany seizure'ALGIE VASCULAIRE (in french) Right teethMy lips are wasted painkillers(My grandmother hgad trigeminal neuralgia;he thinks i'm my pains are psychological "hysteric nevrose"the doctors says it isn't thati'm a french i'm 20 years old. i can't find informations about this symptomes ( doctors don't know it and believe that my pains are psychological) so could you send me information about this characterization and the treatment for this syndrome. i would alHELP ME, PLEASED%YD Equipments, Pulamon , KottarakkaraKollamKeralaIndia691506 0474-453225ydeq@satyam.net.in svere migrainfading of visionx-ray*took tablets to increase blood circulationAshraf,Saadat abad, motahari shomali, sahel 3, N.12TehranIran 199887546198 - 21 - 207 - 2104poppycorn_sh@hotmail.com My motherSomething like epilepsy6What kind of eye problems? Did the scan show anything?17 Leinster Lawn, ClonskeaghDublin14Ireland00 353 1 2697252sandrashaw@eircom.net$intolerance of light or noise nausea3left hand side - mild affected by wind particularlyno room for wisdom teeth6whisper" upper lip with up drag lower lip also thinnerleft side is thinnerwhen I'm tired it is more obvious. When I[m very stressed it seems to speed up. I think it went active again last year when my husband died. Angela BrightRN Manuel PueblaLatinSometimes my jaw is locked and it's a lot of strain as I feel there is some kind of cramp in the muscles of my neck and below my toungue. Usually happens when I'm nervous or in a stress situation; also in cold environments.>When I was a toddler I had bronquitis (is it spelt that way?).7No, I am not even sure if it stopped but I guess it didThe athrophy became more and more evident as the rest of my body developed normally, but as far as I'm concerned it stopped in my early teens (about 14 years old). Marilyn NealI have muscle spasms in my Romberg's affected jaw muscle. When I was diagnosed at age 16, the spasms were quite severe. As I have grown older, the spasms are still there but not to the same degree. Now I get quick little spasms that cause me to bite the inside of my mouth and tongue.I have tissue loss on my side above my waist on the Rombergs affected side. It is a deep crease there. It has not caused me any medical problems that I know of.!I feel it stopped in my late 20's My atrophy took most of the tissue on my right side cheek and chin. I also have bone loss in my forehead and temple areas and around my eye. My atrophy was a very slow process over many years. It started around the age of 9 and had burned itself out in my late 20's.II do not believe it is possible for surgeons to give us perfect symmetry.Andrea M. Rodriguez/Production Manager for Screen Printing DivisionVI think it's because I'm a smoker. My dermatologist does not think that it's Raynauds.~Had TMJ for over 3 years now. My dentist, orthodontist and oral surgeon do not recommend anything other than wearing a splint.I'VE GONE TO DENTISTS OVER THE YEARS TO HELP WITH THE SEVERE PAIN THAT WOULD SEEM TO BE DENTAL PAIN. IT BEGAN IN MY EARLY 20'S AT THE SAME TIME THAT I NOTICED THE DIMPLE IN MY CHEEK. MY PAIN WAS SO GREAT THAT I BLACKED OUT AND CAME TO ABOUT 5-7 MINUTES LATER. I WAS TAKEN TO THE DENTIST IMMEDIATELY, TOOTH EXTRACTED BUT THE PAIN RETURNED A FEW MONTHS LATER IN A DIFFERENT AREA, NOT AS SEVERE THOUGH. NO LOCKJAW.WHEN I AM SICK(FLU,FEVER,SORE THROAT,ETC.) I FAINT. BEEN HAVING UNEXPLAINED BLACKOUTS SINCE I WAS A TEENAGER, 13 OR SO. I HAVE BLACKED OUT EVEN WHEN I WASN'T SICK. SOME DOC'S IN THE PAST HAVE SAID THAT I AM BORDERLINE "ANEMIC" BUT NOT ENOUGH TO CAUSE ME TO FAINT. I ALWAYS KNOW THAT I AM GOING TO FAINT WHEN MY BODY GOES NUMB AND I HEAR THE RINGING IN MY EARS. I WAS ONCE TOLD THAT I HAD LOW B/P AND ORTHOSTATIC HYPERTENSION WAS TO BLAME. MY GRANDMOTHER DIED FROM COMPLICATIONS OF AUTOIMMUNE HEPATITIS, MY MOTHER HAS PERNICIOUS ANEMIA AND DJD, MY 15 YEAR OLD DAUGHTER WAS DIAGNOSED WITH ITP LAST YEAR. I HAVE TWO GREAT AUNTS WITH SICKLE CELL ANEMIA. OH AND I HAVE A "SHAKE" A VIOLENT TREMOR OVER MY BODY THAT LSTS ONLY A FEW SECONDS EVERY MONTH OR SO.AFTER 3 INTERVIEWS WITH 3 PLASTIC SURG. ONLY 1 SUGGESTED A FAT TRANSPLANT. I HAD IT DONE LAST DECEMBER. I REABSORBED A LOT OF MY FAT. MADE ME VERY SAD BUT MY FACE LOOKS BETTER THAN IT DID. NO ONE EVER MENTIONED ROMBERGS DISORDER. FOUND IT BY ACCIDENT. VERY BLESSED ACCIDENT. NO M.D. HAS EVER GIVEN IT A NAME. I WAS MARRIED TO AN ABUSIVE HUSBAND AT 18-20. I ASSUMED THE DISFIGUREMENT CAME FROM THE TRAUMA. Vicki Noble OHS ManagerOver the years I do not seem to be able to open my mouth as wide as I used to. For example, I can only take small bites of fruit and cannot eat anything cold.I think the changes to my lifestyle, diet, less stress have assisted in my well being and I do not suffer from headaches as much. However the tissue wasting is still happening, but has slowed over the last 15 years and is now very slight deteriorationHeidi Del-TorchioFrenchMother?My pains come from my right cheek and my forehead when its coldWhen I'm tired?Since I was pregnant the seizures happen less often than beforeBryan McDowell Irish/GermanKelly SillimanIrish, Itallion and English%The best job in the world...A Mom! :)FEpstein Barr Virus, IBS, Female problems(as I explained in first part)pI Can't answer this acuratly because it started again quite recently, but had slowed down for like a year or so.jIt started when Iwas plannin< g my wedding 1995 but dfinitly speeded up when I became pregnant early in 1996EDefinitly pregnancy...first three months and then after delivery too.QMy first reconstructive free flap took 11 hours and was a total failure. I swelled up so much that some skin actually died on my cheek. I actually had a whole there for some time before the stiched it up and now have a scar going across my cheek. My second flap lived, but fell. Then I had a surgery to pick it up..then it fell again so I had a fourth surgery to fix it that was last july 2000. I have a feeling I am going to have surgery again cause it either fell real bad again or is progressing...I feel its progressing..but I will let my dr. take a look at it. ( He is in NY I am in Fl!!) Heidi Febles Spanish/CubanSenior Manager/ITQMy jaw locks up periodically. Its like the muscle is having a spasm and it locks.#I have had ovarian cysts and PolypsI had several surgeries. I had tissue removed from my belly and inserted into the face. It didn't seem to work so they removed tissue from my butt and inserted into my face. I think it has slowed down but now i feel like it is affecting my eyes.@A large piece of dermis from my butt and inserted into my face . Amy BennettWhite AmericanComputer Professional31 Brain biopsySara CAUCASIAN self-employedThey are permanently numb and feel constantly cold & tingling.. when in hot water or cold temps this effect increases and they turn bluish-purple.Annabelle WoodeWhen the weather is very cold, the fingers on her left hand go white and her hands feels all tinglely6 Amlie LozeauNorth American, whiteoccupational therapistMy hands are often coldYMy jaws were not closing properly: One of my jaw was 'oblique' and the other 'horizontal'I saw a dermatologist recently because I noticed that I lost hair near to my forehead on my involved side: I am taking now Rogaine 5% to try to control this lossWhen I had a surgical reconstruction of the forehead with silicone, the atrophy at this level stopped but not at the level of the angle of my jaw and the cheek.I do think that at 19 when I had all my wisdom teeth taken out by inpatient surgery I did notice a change in the rt. side of face. Silvia MolerMicrobiologist{Sometimes my hands and feet get very cold. At night I have to sleep with socks so my feet don't get cold and become purple.=Excesive swetting from my armpits. Back problems (scoliosis).ALLODERMJAlloderm in 1999. It helped a lot and the procedure was not to complicated Tom Sabel Social workerI have the scleroderma from Rombergs on the left side of my face. I have been diagnosed with colitus, depression,and possibly thyroid trouble when Iwas very youngI use to have the spaams where the area under my jaw on the affected side of my face would get knotted up and I had trouble opening my mouth. This problem has disappeared since I began to take Celexa and Buspar.38-39 I think.Susan L. Spiesegerman/english descentrural letter carrierCan't remember what the doctor called it but the joint is not right on the romberg's side of my face. It gets sore sometimes & I cannot fully open my mouth without painjfibro-cystic breast condition had 1/2 my thyroid removed due to tumor...needle biopsy showed hurthle cells late 20'sJane Valerie SandallHBritish (Irish/Scottish) caucasian (is that the correct spelling !!!???)Computer Systems{miscarriages and premature birth of baby at 26 weeks which died after 9 days. i have not been successful at having children pre-teensAfter a series of silicone injections over months, I had to have 1 operation to try to drain out silicone that was previously injected but did not stay in the Rombergs areas of face. It moved to areas which had softer tissue. the Rombergs areas had tougher, tighter skin so it was pushed out of these areas into the softer areas. This operation did not work. this series of injections and the operation were done in approx 1967/1968 by Dr. Jack Penn, a renowned plastic surgeon in Johannesburg, South Africa Julie BackeP1/4 Scottish & 1/4 Swedish - the rest is a Heinz 57 mix of welsh/german and moreCorporate ParalegalWHave deveoped allergies in recent years. Sinus infections on left side. Bowel problems.Annette Marie (Halladay) Morris3French, Irish, Belguim, French Candain and American)Sales Clerk and Full time college Student'The doctors have diagniosed me with TMJ not sure,RECONSTRUCTIVEvthey put in plates, to build up the bone, one across the cheek (under the eye) and one across the jaw and on the chin.The lipo, that was inserted into the cheek to puff it out, didnt take in the frist surgery and became infected and drain out it after the second. Teresa BurksEI have Scottish, English, German, Irish and Cherokee Indian ancestry.Insurance adjuster>I have alot of surgery, so I can't tell if it has slowed down.It was an awful experienceLes BienkiewiczPolish,ex Army officer (22 yrs); now public servantHigh blood pressure.mid 20sSean William Pricewhite north americandenta lab technician-Had quite a few episodes during ME where whole body would go numb a heavy weight like a sort of paralysis. Had an inclident when I was on antibiotics seem to go into a sort of hallucination, my sister and mother found me on floor with my chin and arm slightly slanted as if it was like a minor stroke.,It seem to stop when I was a child about 10.'Unsure but no obvious dramatic changes.JThe problems regarding eye etc did appear after chroonic fatigue syndrome.When I am ill people say visually it is more noticeable although visually people generally dont notice as I have very slight atrophy .Problems with front teethTammy Loretta FlemingScottish Teachers aideEyesight and hearing is fading on the affected side of face. Inner ear infections have become a problem in the past few years, once again only on the affected side.81STRESS,(not enough sleep, emotional upheval,ect.)CollagenIn the late 70's early 80's I had many collagine injections. these were useless as the collagine would disappear in about 3 days.Erik R. Copeland)White (English, Irish, Scottish heritage)15?Jenifer Reaveley GleedCanadian , WhiteHealthy No other problemsANot sure If the medications are the reason or not. Methaltrexate.Jennifer van Gemert8Student at present/Graduate Diploma of Primary EducationI suffered from post operative depression on several occasions and clinical depression at other times. In regard to Asthma; this was instigated when I suffered with severe Pneumonia in 1992.nThis occurs randomly and without warning although it is worse when it is cold. It is not a frequent occurance.:1986 Herpes Simplex (orally)requiring hospitalisation 1990 Ingrown toenail operation (infection) requiring hospitalisation 1992 Wisdom teeth removal requiring overnight hospitalisation 1997 Glandular fever with associated hepatitis requiring hospitalisation 2000 Undiagnosed gastric virus requiring hospitalisationAs I was saying before the reason I went to the doctor in the first place was to see if there was anything that could be done to "fatten" up my jaws. Also I got tired of being stared at as I have never been sick since the age of 12 when I caught spinal meI have no concerns. I just want to say thank you for the research you are doing and the survey is a wonderful start or addition whichever you choose. I could not find any research on Romberg's in 1994, the biggest medical journal at my local library had n Kamerkamp 13 VelserbroekThe Netherlands1991 DA31 23 568 7622Marijke.Zoon@KPNQwest.comAfter a very stressful period in my life, I lost many kilos and when the situation was normal again the left part of my face stayed skinnyNot any more but I used to have pains around the area of my ear and my jaw used to be very sensitive (probably because there was not too much fat left there).According to the Chinese doctor, the left side of my tongue shows less "fat" as the other side. There is a disbalance there as well.wAt the Chinese doctor the< y looked at the Ying & Yang balance of my organs by looking to my tongue and feeling my pulse.Acupuncture in my face - until now 8 treatments. I only go once a week (because of work) but a treatment every other day would be the best. During and after the treatment (of 30 minutes) that area in my face is really glowing and more fat developed in thaLmaybe the stressful period in my life (for about 6 months) of loosing weightYou can use my input for your research but I don't want to be questionned my other victims because I don't want to be too busy with this problem anymore. So I would appreciate to treat my private information confidential. thank you and good luck with the inesTunisTunisia203300 216 1 296751i_braham@yahoo.frza very strong asymetry at thechin: like a very clear line in the middle of it: then a progressive atrophy of my left cheakwhen i was 14 years old, I went to an orthodentist to fix my teeth because i had ; they said:"an awry smile" Now the gum around my teeth are becoming smaller and tthe teeth more showngum's atrophy on the right sideGI always had a stonger short-sightedness at the right eye than the leftiI have one nail that seems to be disappearing: the index finger on my right hand is like becoming shortermay be one aunt: but she died young and she never had been diagnosed: every body just always used to ask her who hit her on the face when she was a child because of the asymetry on her faceAThank you for working on this research: I hope I've been helpful!Hi, My first name is Ines; I hope I've been helpful; About my index finger: it began with the nail starting to be progressivly white: like taken off from the finger: and now of course it seems like the top of the finger is shorter and more thick: thyou can publish every thing in my concern: I can even send you some pictures if you want to show you the evolution of the atrophyGWhat is your first name? Is your finger shrunk or is it just your nail?$9 Daubeney Gate, Shenley Church End, Milton KeynesBucks.UKMK5 6EH&01908 505294 = home, work=01908 251600jane.sandall@eds.comOn Back below scapula9misaligned on left side & front - both upper & lower jaws2i also have 2 romberg patches on my left upper lip)my left eye is much weaker than my right.when i was about 13 i had live silicone injections into the romberg skin areas to try & plump them up but this failed because the silicone moved to the unaffected softer skin surrounding areas. i then had to have surgery to try & drain the silicone out buQi have my 'story' on the Rombergs Connection Personal Stories page called 'JANE'.When I was about 11 Years old, I had a surgery on my left ear to repair a perferated ear drum. about 6 months after that surgery, I started loosing my hearing, then I started noticing a change in my facial features, such as the atrophy on my left side. When I had gone in to have my ear checkup, they said that in 1 year, I had lost 3/4 of my hearing in my left ear. I kept hearing them mention the 5th and 8th nerves, and saying those were probably the ones that died. I was young, so alot of this did not make any sense, so I may have a few things confused, but I do remember the 5th and 8th part. So the surgery was a success, but I had to pay an even larger price... my hearing. Susan Niles3Irish, English, German, French, and American IndianSchool Teacher-Right perforated Temporomandibular Joint discVertigo, two bouts of feeling like I was being pulled to the left while attempting to walk. I was given medication, beta balancer (?) and eventually went away after several weeks.Age 11Age 3 and stopped at age 11 INFECTIONA possibility of having pneumonia prior to the onset of PRS and then moving from St. Louis, Missouri to Miami, Florida at age 3 1/2. A new environmental change.qI lost the sight of my left eye at age 23. Eighteen months after the birth of my daughter. No changes since then.XStrabismus surgery of the left eye at age 48, 25 years after sight loss of the left eye.Sally VanRaemdonck(Caucasian- Irish, English,French, GermanLegal AssistantJoint pain Fatigue Late 20's Lorin Marlowe minor child)difficulty falling asleep, staying asleepNatasha GeddieQAustrian & Irish (biological father) French & Cherokee Indian (biological mother)4Sr. Litigation Paralegal, musician and music teacherdAs stated in Part I of the survey, a neurologist (Alan Naarden, M.D.) ordered an MRI of my jaw in January, which reflects severe degeneration of the jaw bones which he interprets as a severe case of TMJ. I have been referred to a dentist to see about getting a device to sleep with in my mouth, however I haven't been able to afford to go to a dentist yet.NI am being treated for bi-polar manic depression. I have also been treated for marijuana dependence. I was initially diagnosed with severe depression in 1991; I did not know until last summer that feeling like I am on the top of the world with endless energy to play music and write, etc., was another aspect of the same mental illness. On my father's side of the family, I have lost 2 half-sibling sisters (one was 30, in the 1970s, the other about 47 in mid 90s) to suicide. My father's brother also committed suicide in the mid 1990s, after suffering a series of heart attacks. My biological father died of a heart attack in 1977 when he was in his mid 50s. I do not know as much about the medical history on my biological mother's side of my family, except that I do know my two half-brothers and one-half sisters also have problems with alcohol and/or drug addiction. (The gentleman in photo #3 below - is exactly the way my face has been affected. His is the closest image I've seen that resembles the way I looked prior to surgery. I would be quite interested to know more about his medical hx.)14 - started then and stoppedRecovery is taking A LOT longer than the surgeon said it would. The surgery did take longer and was more extensive than he originally planned, also. He said he had to 're-do' it after he'd done it the first time, because the flesh wasn't the proper color.Martha M. Hollingsworth&Irish, Indian, German, Italian mixturedental hygienistsI don't believe I have color change but frequently I have cold fingers especiallly the fifth fingers on both hands.RIt is so difficult to tell, I was undiagnosed for so many years I just ignored it.In my 30's. I don't know if it speeded up or it was because I married a man 6'4" and he told me it was worsening as he was always looking down at my headHow can I know, but I do believe it's hormonally related. I feel it is increasing now and that hormonally I feel like I am having my last "hurrah" before menopause.None of this is quantitative.My "coup de sabre" is only on my head and is covered by my hair. It has just reached my forehead in one spot and I would consider surgery if it crossed my face. Jacob McGowan%Caucasion - American - Father EnglishNot applicable - childno name please"program director of alzheimer unit&obesity, cellulitis, infections, ezemain my thirties. late thirtiesTRAUMAialthough I thought it was in remission and started again after a trauma tothe head as i mentioned before.vI can't be sure, but when i was on a diet drug with phentermine I thought that it had speed up the deterioration also.Tina Frances Michelle Paterson MIXED RACE Mixed raceNURSERY HELPERLHANDS ALWAYS FEEL COLD I AM NOT SURE OF BLOOD GROUP I THINK IT IS B POSITIVEePALPITATIONS, IRREGULAR HEARTBEAT, DEPPRESSION, CATTERACT, MIGRANE, BACK PROBLEMS ON RIGHT HAND SIDE, 14 -15YRS 4YRS TO 10YRSTISSUE EXPANDERTISSUE EXPANDER TO EXPAND HEAD TISSUE ON BALD PATCH TO ALLOW TISSUE TO BE TIGHTENED MAKING BALD PATCH LESS NOTICEABLE. OPERATION FOR TISSUE TO BE INPLANTED UNDER BROW ON FOREHEAD FAILED CAUSING INFECTION, OPERATION PERFOMED TO REMOVE INPLANTED TISSUEXI HAVE LOOKED AT THE PICTURES BELOW, PICTURE 1 AND PICTURE 2 IS MYSELF AT A YOUNGER AGE.Samantha Beth Bishop(English Canadian - Irish/Scotish/EnglishLab AssisstantRHINORhionoplasty (spelling?)< Lauren Couchoud home maker16-21I WOULD BE GRATEFUL IF YOU COULD HELP ME WITH SOME OF MY QUESTIONS AND CONCERNS. I WOULD HAVE NO OBJECTION TO YOU CONTACTING ME OR YOU VEIWING MY PHOTO'S IF THE HOSPITALS ALLOW. MANY THANKS TINA PATERSON.34 westlea Ave Harrogate Yorkshirehg2 0atjason.couchoud@btinternet.com(fat has gone under half of my right browWhen I was 18 I developed optic nuritis. But a very atypical case. It VERY slowly progressed over a 6 month period- untill my once perfect sight was so far gone I could only tell light from dark. LP - normal*Had TMJ as a child. Went away on it's own.Rdepression, fatigue, panic attacks, general confusion and forgetfulness, headaches2-3 months of onsetstressLI have recently been diagnosed and have not taken any drugs for my symptoms.I've noticed the scleroderma plaques seem to start in places that have scars already - I have a scar on my right cheek, which is the result of having a mole removed as a teenager. I've noticed in the past few months, the scar has doubled in size. Addition Sandra Lehman caucasion-abnormal CBC diagnosed as bone marrow problem1it has been steadily progressive since it started Gokhan Ceylan Technician#Change in structure and appearance.Henrik Thrling kaukasianXThe color of my hands range from very red to almost purple when exposed to cold weather.Have an area, a oval spot (about the size of a small matchbox) under my left breast. I got it when I was about thirteen and got it diagnosed. It was a fairly rare type of skin disease that was said to have most likely been caused by an insect. But since I13-161st operation: Expander placed under skin over the 'coup' to stretch skin. This for... 2nd operation: An so-called "acrylat" (sort of plastic) were fitted to the bone to cover the 'coup' (left forehead, left side of skull (top of head)). 3rd operation: FaAmy Michelle BeckerPediatric ResidentQMy jaw often "pops" and is painful, but I have full range of motion of the joint.I have pernicious anemia6Plastic surgery on my scalp to remove the bald places.Deborah D. Fambry*american with german/indian /irish(decent)medical assistantMat times my hands have stayed cold and achey and get a blueish tent to them .most all DX:have passed with time . except the vetiligo and the joint pain and swelling also my son has a patch of silver that appeared on the rt side of his head about the size of a half doller when he was 12 after a seizuer.Monica M. SeiberlingeI wish I knew. My docs thought that the meds I was on may have helped (Aspirin, Tegretol, PropranololMy physicians advised that I avoid surgery- not sure what "speeds up" the atrophy. Injury to the face was one theory and so they said try not to have any surgery Alisa SiskteacherEIt was thought to be an inflammation of the TMJ and it does re-occur.BIt has progressed across my scalp and just above the left eyebrow.vExclude Part 2 HAD completeKnows blood groupLock JawName Ethnic origin Occupation Blood GroupRhesusLupusRARaynaudsMSIBDThyroid Ank SpondEye inflammationAsthmaCFS DepressionVitiligo Cold Handsinfo about cold handsProblems with JawInfo about JawOther Medical ProblemsEver stopped or slowed downHow old when stoppedAnything make it slow down?More about stopping factorsEver speeded upHow old when speededPregnant when speedingAnything make it speed upClassificationMore about speeding factorsOther speed slow things Number opsFat Fat outcomeSiliconeSilicone outcomeFlap Flap outcomeBone Bone outcome TrigeminalTrigemina outcomeOther OTHER OP CODE Other details Other outcome Other surgeryHAD1HAD2HAD3HAD4HAD5HAD6HAD7HAD8HAD9HAD10HAD11HAD12HAD13HAD14 Corner of EyeMiddle of Eyebrow Near middleSeverity Anxiety ScoreDepression ScoreAV SignificantMEDi Highly sigTraumaNumber with surgeryDenominLine and CheekNeg% Surgical TreatmentsAny surgical treatment- Fat injections Flap / pedicle procedure Bone implant Silicone injectionsOther OperationsAlloderm injections 1 successfulBoth unsuccessful No ratingYour ageNumber of RespondentsAge0-1011-2021-3031-4041-5051-6060+ExpectedExpected Aus and NZ Expected USAus PopNZ PopAddressCityState ProvinceCountryZip / Postal CodePhoneEmailSex Handedness First symptomOther first symptomOther first symptom2Age first symptomsAge first diagnosedDelayWhere is atrophy - Face Side - faceUpper lower - faceWhere is atrophy - Arm Side - armUpper lower armWhere is atrophy - Body Side - body chest abdomenWhere is atrophy - Leg Side - legupper lower legLeft eye colourRight eye colourOther eye colour info Hair problems Hair describeEpilepsyHow old epilpesyLatency for seizuresWhat are seixures likeArm or leg that shakes?Location of shakingSide of shakingHow often epilepsy attacksNumber of tabletsHow old when seizures stoppedSurgery for epilepsyMigraine Age migraineOnset to MigraineHeadache description Side headHow often migraine attacks Tingling down left with headache!Tingling down right with headache Weakness down left with headache!Weakness down right with headacheOther symptoms with headache Facial painFacial pain descriptionFacial pain description2TeethTeeth descriptionTeeth description2LipsLips descriptionEyebrowsEyebrows descriptionVisionVision descriptionVision description2TongueTongue descriptionOther symptomsOther symptoms2InvestigationsCT HeadMRIEEG Brain Biopsy Other tests TreatmentsSteroids Azathioprine PenicillamineReconstructive SurgeryOther TreatmentsRelatives with PFHAPFHA tell me moreRelatives with epilepsy Relatievs epilepsy tell me moreRelatives medical condition 319-277-5030ggneal@cfu-cybernet.netAbdomenMy doctor says I have a "classic" migraine, one in which I sometimes see the colored lights, but it does not develop in to head ache pain.sI have a tingling sensation on varying parts of my body at times. They do not seem to be associated with headaches.UMy teeth do not quite fit together properly. I have not had anything done about this.=I have atrophy on the right side of both upper and lower lips+My right eyebrow is much lower than my leftThe vision in my right eye is not as good. My doctor blames this on the dryness that I have on the right side. My right eye is very recessed.I have tissue loss on my right side above my waist. It is like a deep crease. It has not caused me any medical problems that I know of. I have muscle spasms in my affected jaw.It causes me to bite my lip or tongue. I think many of us have emotional problems that can go along with living with a facial difference.TI have had 2 major reconstructive surgeries and 2 follow up revisions for my atrophy@I did have a very bad fall as a child, but did not see a doctor.I am grateful to you for your interest in those of us with Rombergs Syndrome. Very often the medical community is not interested in us because we are so rare. I hope your survey goes well and will be looking forward to receiving the results of it. I am a Wanted to know if she could helpPleased to have her help234 N. Hawthorne Dr South BendIndiana46617 219-233-9234nd234irish@aol.comPNoticed that my hair has turned white in some areas on the left side of my scalpPFacial pain happens mostly around the affected eye. Also facial pain due to TMJ.)The lips are thinner on the affected side>The eyebrows diminished in some areas due to en coup de sabre. ginger_pettal@hotmail.comFemale4? petit mal from 2 years of age (so my mum tells me)LeftUpperBlue8? not anymore. i haven't had any seizures since i was 8.MaoriUniversity studentfIm very sensitive to the cold, my hands s< ometimes turn white/blue and if i get really cold i feel sick Mary ToledoGerman IS-Technical%I do have spasms sometimes in my jaw.5-6!It started very aggressively at 3COSMETICI have had my nose straightened with the use of ear cartilege. Had my lower eyelid thickened a bit with some of the skin from my upper eyelid. Had my upper lip thickened with grafting from the lining of my mouth. I have probably forgotten some of them. Hyunjin LeeKorean researcher24-I think.. Fatigue and stress make it speed upPetra R. MedinaSpanish-AmericanAdministrative Assistant10?hI really didn't pay attention to how long it took, how old I was, or whether it stopped or speeded up???FOAMpiece of foam shaped to fit over my right side by my ear and jawline at age 18 in addition to fatty tissue taken from my stomach to fill in around nose and cheek-bone downeventually the "piece of foam" has shrunk and broken up and I think is still in by my jaw someplace; it seems to be hanging in the throat area immediately below the jaw kind of in a lump. I guess I just forget it's there and have never thought about having it removed. The silicone injections I had later on in the 70s around the nose in directly below my eye has stayed pretty much there but the rest of right side of my face is shrunken in along the ear and jaw.Craig MitchellSoftware Engineer16jHad excesive fat after graft (expecting some absorption) and went for a type of lipo to remove excess fat.Rose M. GoodmanGermany / Irishsales - construction industrySometimes it tightens up so much in the afflicted area that you can see the tension and it hurts!I have to try and stretch it just like a cramp in any other muscle.&based on photos, it was active 5 yearsWas a healthy child - first noticed at age 13 and it progressed so slowly that as first the damage was not noticible to my family. Per photos, seemed to have stopped at age 18LASER+Surface laser to smooth out the deep furrows. It did make a difference, however, the part where the muscle still shows (chin closest to the center)is noticible when I move my mouth. In most people this area has "padding" but mine does not so you see the muscle contract which is not very attractive.Beth McAllisterchildRPsoriasis (on scalp). That's what we thought caused her bald spot a long time ago.#we think it is stopping now - at 10ELast year at age 9 was a dramatic year of development of this diseaseJust a growth spurt?D.Garvinscottish,english descent hairstylis28qi had a dermis graph inserted into my cheek and chin. i have not noticed anything more and that was 14 years ago.Ki had 2 pregnancies between age 23 and 26 which is when it was at its worseI was firstly diagnosed with Scleroderma after a biopsy was performed on my right thigh. It was not until I was about 23 (when I moved to another town) that my doctor told me about Parry Romberg Syndrome. He could not tell what would happen later on in li#Whereabouts on back is she affected Thank you920 Coraki Ellengowan Road, West Coraki247166832227shynago@dingoblue.net.auhurts to look at bright lightsright side. the doctors said they where night terrors, bnut they weren't. He would wake up crying holding his face on the right side saying, "its hurting, its hurting" by mum/they dont grip any more properly on right side,+they are lifted and different on right side/tongue wasted on right side.. also tongue tied.Mitchells throat has wasted. his voice has changed... gravelly. His right eye has fallen back into his head. and it seems darker in the iris then the left eye.His nose is also twisted.his jaw bone has wasted so to has the right orbit.The skin staining goes right down to his neck line along his shoulder.many blood testsThe treatment is 10mg methotrexate ( 0.5mg/kg ) once a week and 2.5mg folic acid every day except the day he has methotrexate.Once a month for six months ( 6 lots ) he gets the IV pulse steroid treatment of 600mg methylprednisolone ( 30mg/kg ) over four hINJURY _SCRATCHthere was a dog scratch right on the place it started.. had head trauma, but did not go to doc, had glandular feaver at the age of 3.5 yrsthe treatment has made the skin soft on his cheek - it was leathery. The Doctors believe they have stopped the progression.. they said it was "staticoPLEASE write us if there is anything else we might be able to help with. Thankyou Debbie Hyde (Mitchell's mum.)I thought I should ask you whether you would like photos of Mitchell. I have them on the computer and could e-mail them to you. Mitchell is just five years old MelbourneVictoriajenvangemert@hotmail.comQThe dentist observed differences (left to right side) when having a dental check.uVaries from a sharp stinging kind of pain to a dull ache on the right side of my head, generally behind my right eye.?Problems with concentration, signs of depression (low periods).6Very rarely, but when so on the right side of my face.I needed to have braces (but that may have been a generic/teenage problem I think) - I did go to a maxiofacial orhodontist as the right and left side of my mouth (inside and out) do differAgain the sides differ. The right side of my lip lacked fatty tissue and was very thin. It is now the opposite problem (too much) as a result of having several fat injections and now having put on weight.My right is indented.IAt times of pupil dialation my right eye causes me to have blured vision.I have an indentation in the centre of my tongue and often have a coated tongue that doctors have told me is called 'geographic tongue'.I do wonder sometimes about depression. I realise that many would claim patients with PRS would have 'circumstantial' depression a result of hardship with illness but I wonder if this is so.DI have suffered with depression but do not feel the PRS caused this.Many tests were done at the time of my first pupil dialation. I could get a list if you would like me to as I am unsure of the names and what not.INJURY - BIRTH5Although my Mum has a theory about forcep deliveries!I would not say I have migraines as such, but rather I would call them 'headaches'. I have had migranes in the past but not enough to say I suffer with them. Headaches however are a normal part of my life as I seem to go through periods with them at least`Best of luck with your research! If I can be of any help just let me know! I would love to help.1a Lane Street, RichmondAdelaideSouth Australia503383526413jayn@dove.net.auHsevere aching over both eyes, similar to tension occurs approx 3 monthly I have small cysts - forearm, palm, and abdomen - about 5 all up. Doctor said they were nothing to worry about. After a recent health check at my work - I was referred to my doctor as my cholesterol was so low it didnt register on the machine. Doctor organised blood tests - nothing to worry about as it is quite common for 'young' women to have very low cholesterol (I am not young - I am 46!). I rarely go to the doctor, as I consider I enjoy excellent health - I get allergies, mainly hayfever and migraines and that is all. At 17 I was hospitalised with glandular fever and suspected 'complications'(my mother was told leukeamia), but they were unable to identify the problem - I was advised not to donate blood for 5 years. I am a regular blood donor now and have no problems.About 30Missy Thompsonamerican/white pharmacistThe eye on my affected side has been irritated for the last 2 months. I have been to 2 eye doctors and neither has been able to find anything wrong.I don't remember32I had my first reconstructive surgery on my forehead then became pregnant 3 months later so I am not sure which was the reason for the speed-up. I was also pregnant at 18 but did not notice any change at that time.Laurene StannersUnited Kingdom origin)Intelligence Operator - Canadian MilitaryI'm always cold, more so than just my hands. It has to be nice and hot for me to be comfortable. It is not just that I feel cold, I am cold to the touch. My fingers always go a< waxy yellow/white when they are cold.I've never been diagnosed with immflammatory bowel disease as such, but I've had a problem since birth with my bowels. Most of my childhood I had constipation problems so much so that my parents had to physically help me go to the bathroom when I was a child, and then as I got older I had to use supositories (sp?). From about age 7 on I just suffered. I was in the hospital at 7 and 8 checking to see if I had Leukemia because of stomache problems. All they turned up is that I cannot take ASA. It o apparent reason."I believe it stopped about age 30.Between 25 - 27xIt may have been because of weight training as I lost a lot of body fat at that time, and thus it became more noticeable ORBITAL PROPSThree orbital props were inserted and then removed as they caused double vision. My left eye is no longer propped up yet I now have double vision. It was extremely unsuccessful, and only caused more problems. Carved off some of left lower jaw bone. It was not even an issue with me.I was suppose to have some ear carilege used to build up the inside of my left nostril so that I could actually get better oxyen intake, but it was never done. After the other disasterous surgery, I've never been keen for another surgeon to touch me. Jason SubtI look forward to seeing your report and if you require more details, I am quite happy to provide them. I have been told that this condition is not hereditary so I would like to see what you find out from others.60 Heysen StreetWESTONACT2611bienk@bigpond.comgradual facial disfigurementKMy headaves only last till late 20s - i have been free from them since thennauseaecontinual "ache" .. awareness of tightness. Eye has also sunk and eye is often dry and uncomfortable.8left top of lip is "lifted" and lloks like i ma sneering9.. but .. i always had a weak left eye .. coincidence ??/My sister (53) has lupusINJURY - MILDL@not sure - possible blow playing football but this is not provenCairns Queenslandcollmum@hotmail.comUnerve damage kiara has had dental surgery to remove the damaged teeth upper left side,wasting of upper lip and restricted movement2optic neuritis of left eye responded to prednisone$almost complete wasting of left sidevcontractures on ankle and painful aches in legs some wasting of the oesophigus areas of atrophy on back chest and arms6barrium swallow spinal tap endoscophy extensive bloodsmethetrexate oral predisone and i.v methylpredisilone details of this treatment are available from Dr.Ron Laxer at the Hospital for sick children in Toronto Canada Kiaras treatment was based on a study conducted there.grandfather but stroke related612 months of age fell off sofa and knocked out briefly/kiara has been diagnoised with coeliacs as well25 Trafalgar Street Nerang Gold Coast4211 61402007294sylviahaj@hotmail. com./right side of bottom lip thinned out over night Right side+All squeazed together (teeth) Gums very bad Bottom right lip is thinned alotI have had several operations and most have not helped that much. The disease seems to counter act fats grafts and your right back where you started from. Any man made product, so far turns hard or desolves. The collegan injections really helped more thanThis is a follow-up on the survey questions I > answered, which were e-mailed. One of the worst > affects it has had on me has been the depression. It > really started in High School and has progress since. > I have always wondered if it affected oMAY GOD HELP YOU WITH THIS STUDY. MY HUSBAND AND I HAVE BEEN TO SCOTLAND AND YOU HAVE A VERY BEAUTIFUL COUNTRY. WE HOPE TO VISIT AGAIN.#Thank you and talk about depressioncnjrsmith@yahoo.comNoticeable AsymmetryPurplish/blue color under eye.8Thin upper lip. Less facial hair on left side above lip.don't know if caused by Rombergs, but I am farsighted in left eye and near sighted in right eye. Left eye definately depressed in towards skull. Also cannot close left eyelid completely. Eye tends to be dry and red. Eyes are very sensitive to light.Thin skin on left side of forhead and left cheek is very thin. Very pronounced depression of the left eye. Have a very pronounced coup de sabreThree surgeries. 1st. was a free flap placed in the left cheek area to fill in the depression. Flap taken from the left scapular area. Tissue was placed under the eye, but wasted away. Flap is still doing good, very, very slight drooping. Build-up of the 7Great-Grandmother was blind. Father is blind in one eyeSeveral, but didn't go to the doctor. Hit in left side of face with fist. Fell straight down on head from about 5' onto concrete. age10? Thrown from a bike headfirst into the pavement. Age 12? Knocked out at least 4 times playing football. 13 - 17pI live in the USA. Thanks for the reply and assurances. Let me know if you need any other information. LucianIf you do a follow up survey I would include some questions concerning the psychological effects this syndrome has on people. I do not give permission for my name to be given to anyone in relation to this study.Country of Origin Use of name20117 Ne 198th St Woodinville Washington98072 425-844-2879kimberleymcmichael@hotmail.comGminimal shrinkage on right side of upper lip and even less on lower lipblood tests by rheumatologist- scleroderma tests, lupus tests, other autoimmune disease tests and blood tests- everything came back normal- both my MRI and blood testsI am scheduled to have reconstructive surgury next month. I was recommended to have a fat transplantation surgury or alloderm insertion. I chose alloderm insertion that will augment my lost tissue.;but I do not know my paternal grandfather and his ancestorspuberty( my disease began right around my first menustration) and then pregnancy( as this is when my disease came out of "remission"- possibly hormones could have played a partsmall bald patch on and slightly right to the middle of the top of my head, loss of eyelashes on the lower lid of my right eye, increased pigmentation under my right eye where the most tissue has been lost The disease began when I was 15 years old with fa<thank you so much, hope this will help someone in the future!Thank you comment about pregnancy1109 Hwy 20 EastColville99114 509-684-5988momelee@theofficenet.comWhen I was pregnant with my second son Michael, I was given a epidural needle in my back on the left side. Well, he must have tried to at least three or four thunps before he had got it in. He (the anaethetist) could not believe what he was seeingbut finally managed to get it in after nearly knocking me off the bed. The bone structure on that side seems different than the right. The nerves on the left side particularly sensitive especially if I get my legs waxed.There is no treatments. My mother was told by my family doctor when I was a baby to treat me like the other kids. This was the most obsurd and insensitive comment anyone could have said.DBut my grandmother who I take after has a smaller left side as well.MMy left arm is a little tighter when I get really stressed or under pressure.0I can't believe somebody wants to know about me.50-7925 Simpson Road SaanichtonBCCanadaV8M1L3 250 652 0293semery@pacoast.comy I noticed my left side of my face was starting to look skeletal like and the tissue felt thinner than my right (no fat).My right eye lid looked droopy but only becuase myleft eye was appearing very sunken. so basically nothing wrong witht he right side of my face just my left side.= deep throbbing in my head and then sharper pain on one side. Face painleft more my gums have receded on the left side.there is tissue loss in the upper frontal region so it is very boney inside my cheek to gum areanmy eye sight feels weaker and my eyes get more tired but it could just be age and working on computers all dayI had a full medical check done 2 years ago, as requested by my neurologist, Dr. Benasayag. Anyhow, i have never taken any medicine or drugs for this disease.$Father Diabetic. Gra< ndfather Cardiac? I would just appreciate not being named in any publication. I did allow my plastic surgeon to use my photos in discussing the illness with new patients but that was just between them.I would be interested in anything the research comes up with. This is a very mistifying disease and can be very hard to deal with emotionally.6Needs reassured that name won't be used in publication(Reassured - mentioned emotional problemsBox 155BenaltoAlbertaTOM OHO 403-746-2977tfleming@wolfcreek.ab.caA small bald patch started on top of my head, then deepened and continued to travel down my scalp, forhead,eye,and nose.Also two other bald ravines on the right side of my scalp apeared Extreme Hair loss on top of headUHave difficulty with sinus on left side. Horrible sinus headaches when I have a cold.I've never complained to a Dr. about it as I have not had a Dr. who knew any more about the desease than me.I have just a general feeling of tight squeezeing on the left side of my face. It also feels like someone is pushing on my eyeballThe top tooth on the left,right next to the front tooth, never came in after I lost the baby tooth. The bottom,left incisore came in half formed like a volcano and was WAY out the side of my gum and way evenually removed.Top left wisdom tooth never has come down.(X-rays show it's there) All other teeth are naturally perfect as are the rest of my familys teeth.sOnly half an eyebrow on left side as the hair al fell out when I was 6 or so as the desease travelled down my face.&Left eye is weaker and light sensitiveI am very curious as to whether stress may trigger more atrophy, as my patches (mostly on scalp) have gotten deeper and wider at times of high stess in my life.None9I am going to have fat injections to my face on May 30th.@Maybe. Stressful time as my parents were having a messy divorce.I am VERY excited about this survey and happy to be finally diagnosed. It has been wonderful to find the Rombergs Connection. This is a very lonely desease to live with and the website has given me much peace and suport. Would love to have a copy of your Hello Dr. J I was pleased to here from you and I am so excited that someone is interested in this desease from the medi2022 Windy Oaks Drive BurlingtonOntL7M 2R5regcopeland@home.comlI can't recall all the tests he has had. He went to a clinic at Sick Children's Hospital in Toronto, OntarioA skin ointment was prescribed (I'm sorry I can't recall what it was) but a pharmacist advised us that cream could agravate his skin. My son is a redhead with the pale skin that comes with it. He decided he didn't want to attract any more attention to hisMy son received a bump on his forehead while playing hockey. A tiny screw that attaches the face mask to the helmet poked into his forehad. He should have had a stitch but he wouldn't let the doctor near him. Can't recall if he already had the alopesiaOur son was seen by a Dr. Bernice Krafchik at the Hospital for Sick Children in Toronto. She was/is the head of the Dermatology Dept. Our son was also seen by Dr. R. Laxer who is a Rhumatologist. They felt our son had a combination of Parry-Romberg/linearErik gets headaches, though not migranes. Whether it is caused by PR, it is difficult to tell as he uses a computer quite a bit. Erik also seems to get a lot of leg aches but he works in an indoor ice rink where he does a lot of walking wearing work boots24202 56th AveLangleyV2Z 2N9 604-533-73602d._gleed@telus.net (Dee Gleed filling out survey)IHair Loss from forehead to upper back part of skull along the center lineNot Migraines but had freguent headaches. 3 to 5 per week Controled with 2 Tylenal. The headaches where frontal in nature, lasting 2 to 5 hours. Light somewhat bothersome (One of the reasons an MRI was done and her diagnosis changed from En coupe de SabreNot exactly sure what changes were detected in her Rt eye. Some type of floaters caused by inflamation. With cortisone treatment condition disappeared and has never reoccured. (Seen every three months by an opthomologist) (Second reason MRI was done)MethotrexateCortisone started in large dose. Methaltrexate started at same time in low dose. Weaned off of cortisone over 3 months. Methaltrexate increase over three month to 8 pills once a week. Has been on them for a year and 5 months at that dosageINJURY WITH BRUSINGPrior to the start of the disease my daughter colided with her brother causing a major bump and bruise on her forehead. 2 Weeks later she ran into the corner of a wall which also caused more bruising. It never went away so we contacted our& Jenifer's Parry Rombergs has not been active now for 6 months. If continues to show no sign of flare up her Methaltrexate dose will be gradually reduced and stopped over an eight month period. Jenifer's MRI show changes to the outer layer of her brain (whThe MRI showed changes to the white matter on the right side of her brain. 2nd MRI 6 months later showed no changes. She has a third MRI booked in October. Jenifer's PRS is dormant at this time. She has had no further changes to face for over 10 months Do CoquitlamRight pupil remains dilated at all times - I believe it's called an 'aides pupil' and recently the vision in my right eye has worsened significantly_Skin biopsy of scalp. Atrophy of insula and opercula.. MRI stable since 1989 (when she was 31)Plaquenil 200mg, bid, qodBald patch excisedWhen I was 8 years old, I noticed my hair falling out on top of my head, just to the right of center. I developed a rather large bald spot, but was able to adequately conceal it with hair. Shortly after, I developed a dark discoloration of the skin on the"Brain Lesion? Age Epilepsy stopped 554 W BoulderColorado SpringsColorado80905 719-444-8954angelsoulkisses@earthlink.netzwasting away of the fatty tissue of the left side of the face, left shoulder area, left upper arm underneath and left handAs for the reconstructive surgery. I will be having this done on June 14th, 2001. They will be taking a muscle from my inner thigh and will place it in the right side of my face. My surgeon will also correct a small dent I have in my forehead with a coral189A Grenfell HeightsGrand Falls-WindsorNFA2A 2J2 700 489 8079karensmith@mail.gov.nf.cahsometimes stabbing pain in the left temple ... there seems to always be an aching pain on the left side.left side ... i have precious no knowledgeable medical personnel in my area, therefore, much of what i experience goed unreported and is thus not described by doctorsXweaker on the left side ... more crowded on the left side ( due to less space, i guess)?Hsmaller and thinner on the left side, plus more lines above the left lipleft thinner than rightastigmatism .. left eye weakerleft side smaller than rightlarge dark (yucky) patch on the left side of my neck ... called a borth mark but obviously related to the rombergs also , i have a "patch" ( called "cafe au lait" by doctors) that is on my lower back , but does extend past the left side.as well, there is an overall weakness in all muscles on the left side of my body .. and i can notice a difference in size as well ... with the left side being smaller. also the hair on the left side of my head is much thinner that the rightmy father has the cafe au lait spots as well as a skin disease that is associated with leprosy ?? can't remember the name of it but it is controlled by medication#a few "bumps" that required stichesi have lived most of my life with this thing not knowing what i had ...i still do not have immediate access to a medical person who can guide me through this ... i would like to know if there are any test< s i SHOULD have completed and whether or not this t thank you for your response ...the skin problem dad has is called Dermatitus Herpetaformis (excuse the spelling!!!) ... it is controlled by a medication called Dapsone (i think) the difference in the size of my left and right limbs is not noticeable 4Left arm,leg and body affected? Fathers skin disease9Do you know any specialists - any test I should have had?341 Geneva CrescentMontrealQuebecH3R-2B11-514-733-1529sgr@vl.videotron.ca-skin creams, laser surgery to remove the mark21st cousin diagnosed at 18 years old with epilepsypossibly a bruise to the faceActually, I am Nicholas's mom doing this survey. I am hoping that this disease has stopped. We were not aware of what was happening to his face, & he is lucky because it is not a very large area that has been affected to date. No one was able to identify 308 - 1010 McKenzie AveV8X 4B2 250 744-5985beanielms@hotmail.comSince basically birth I had had a concave left forehead, my left nostril was quite small compared to my right, my left upper lip was quite small compared to the right. When I hit about 25I guess the syndrome excellerated and suddenly my left eye sunk in, and it started to get irritated all the time(from drying out). I lost all fatty tissue on the left side of my face, and now there is a big indent underneath my left eye See belowFrom fifteen to seventeen I had blurry, tunnel vision. It would then clear and the pain would arrive. If I could get the Tylenol into me during the blurry, tunnel vision and get to bed to sleep I could miss the pain. I did not have migraines for awhile unI am not really sure if it affected my teeth. My teeth were all over my mouth and I had too much so I had a second tooth removed and braces and retainers from the age of 12 - 17.At 8 I also had some gum surgery as my gums were receeding and if I had not done that I would have lost all my bottom teeth. None of this may be related to the syndrome.lMy upper left lip looks like it is missing a large portion of it, making it a lot smaller than my right lip.My left eye was always lazy, and after they did surgery, by putting in three orbital props to raise the eye (after it sunk in), they caused me double vision when I look left, up or down.They removed the three orbital props, thinking maybe they had interfered with my vision, but I still have the double vision, and my left eye is back to being sunk in.I also had some fat injections (from my thigh) to my left lip and to under my left eye. Neither worked as the fat disappeared within about two to four weeks.TI have a second cousin in Australia who developed Epilepsy when she hit her forties.It seemed to excellerate when I was working out on weights. I am big into running, swimming and biking, but when I got involved in weight training I lost a lot of baby fat. From then it seemed to keep going on my face even after I quit working out.I have a lot of bumps and hollow areas on the top of my left head. At times there is a lump that aches on and off and then stops for awhile. I also had a bigger left sided jaw, so when they did the disasterous eye surgery and the forehead surgery, they cabulldog@sympatico.cabottom right lip is numbi have a very mild case of it compared to alot of people. it has affected only the right side from my cheek bone down including the skin on my neck.7 Dahlia Street, Apt. 4 Dartmouth Nova ScotiaB3A 2R6 (902)461-2998beth.bishop@ns.sympatico.ca*Doctors describe them as Classic Migrainesalong with the tingling it's like a dead weight. I'm very clumsy. When this starts I can stop it before the headache starts with 2 extra strength Tylenol. Sometimes it starts with squiggly lines going across my vision and I can stop it the same way as aboQmy eyebrow is still there but I have a "dent" on that side of my face (left side)GI've had a CT scan and an EEG but it was for investigating my migrainesI don't get many headaches these days that seem any worse than the people around me, but there was a time around ages ten to maybe sixteen that I got these terrible headaches. They would come on rapidly and the pain was like nothing I could even compare. I notice a slite upward slant to the left of teeth in general, also two teeth never came in after baby teeth had fallen out. very odd it was the teeth to the left and right of the two front top teethoI have what appears to look alot like a hair lip. It is on left upper. The area has slite discoloration as wellSome of the other visual symptoms are as follows; missing eye lashes bottom of left eye, drupping left eye, Compromised facial symmetry in area below left eyealong with some discoloration of skin in this area and finally nose that pulls a little to the left. Sounds much worse than it looks7484 Holworthy Way #137 Sacramento958421-916-349-1046dsfoxden@home.com"The first sign was facial atrophy.EI have a small patch of grey hair back of my head. It may be genetic.At first they weren't so bad, then they started to get worse. They went from a couple a year, to a couple a month. I now have one maybe once or twice a year.WJust basically the sensitivity to bright light, and that dull aching pain and sickness.YI used to have pain on my left side, but we believe it was from the loss of fatty tissue.nmy maxilla is tilted up on the left side. It takes more thought to make my left molars to touch than my right.RThe left side of my lip is now thinner than the other side. Just on the upper lip.nI have an asthigmatism in my left eye. I don't know if that has anything to do with it. My right eye does not.I have had a loss of hearing in my left ear and my whole ear sticks out farther than my right. When I was younger, I had a perferrated ear drum (left ear) and when I was 11 I had a surgery to correct it.>About 6 months later, I started experiencing the hearing loss.LPI have had surgery for the right jaw as a result of the left jaw being out of line. The left jaw has been a problem from the beginning and reconstructive surgery did completely align the two jaws.As stated earleir I have been living with intestinal problems for many years and no diagnose solves the problem. I have taken medication for both stomach and intestinal problems with no results. Tests so far have not given any answers. During the years of reconstructive surgery there were procedures that included internal tissue for transplants and has left massive internal scar tissue. I am scheduled to see a surgeron on November 19 for this problem. The doctors think some of the problems with the stomach is a result of scar tissue forcing the stomach out of place and maybe halting digestion processing. I will be glad to advise you of the results of this action if it could be of any help to other Rombergs patients.Has never completely stoppedSherree Wakefieldhouse wife/mother:not exactly lock jaw, put yes i can't fully open my mouth.I just found out that i have an iregalure heart beat. And i have endometriosis that justgot trated for. i am currently seeing a maxiofacial sugeon and a plastic sugeon. And i am about to be seeing a ganetics doctore.20My daughters birth at age 20 was very trama tizzing i had to have an emergeciy cesection, this past year i had another sugery at i noticed again more deteriationI was put on depo lupron shots for my endometriosis this year after my sugery. this stuff also got me to have fluttering heart problems. the reason wy i had to have an emergency cesection when i had my daughter was because a nurse gave me someone elses medication and i had a seizur and my blood presure whent up and my babys heart rate droped so i had to have sugery this medicine was called vancomyicine. Nestor Chavezlatinstufdent Robin Nelson around 36QOkay I have always had a thin face but not to the point where it took everyone's attention when I went out in public but when I got pregnant it started thinning more instead of gaining weight in my face I lost it dramatically and from there it gradually became worse. At this point I h< ated going out anywhere and it started depressing meI have had no surgical procedures. I am consulting with my third doctor(cosmetic surgeon) on Monday, fat injections have been recommended at this stage. Marijke ZoonDutch2PA - personal assistant to SVP Finance at KPNQwestNot really the jaw itself but the muscle connecting the jaws - sometimes when I jawn the muscle is "stuck" and hurts like the stretch is out of it. Then after 1 minute or so, the tension is of the jaw muscle. It only happens when I jawn.2001 I started to have the illness in a period of tremendous stress in my life, when I lost a lot of weight because of not eating or eating not healthy. Since 2 years my life is back to normal as well as my eating habits (spline function and kitney working properly again).I had 2 fat injections - the result was good in the beginning but after 6 months the fat disappeared again. After the second operation a little fat stayed from the 1st operation but again 6 months after the 2nd operation it was back to before. Since 2 months I am having accupuncture treatment from a Chinese doctor who is stimulating my vains again and I must say with 2 treatments per week, the fat is slowly coming back in my face. I am very enthusiastic about this treatment because it's really working. They are looking to the cause as well instead of just filling up the surface. According to the Chinese doctor, my spleen and kitneys are out of balance as well and he will work on that as well.Shandra HubbardAFRICAN-AMERICANREGISTERED NURSE,Fat transplants -not successful - reabsorbedhMy facial atrophy is still progressing for some reason. My main problmes is my right eye which has sunk right back. I have had man surgeries with some successThank you for doing this survey. I look forward to a copy of the results. Romberg syndrome is such a cruel condition. I wish I could find out more about this condition. Why do some people get it? No Email. Wrote a letter insteadbarrylennox@earthlink.netWhite patch of hair on RH side0RH front side was a little whiter (when younger)Mild and occassional on RH sidehRH eye has a different vision to the LH, glasses correct this. RH eye suffers from blocked lacrymal ductRH eyelid appears to "droop" and this eye appears a little smaller than the other. I also have chronic sinusitis on my RH side. I noticed a marked change in my eyesight (RH eye) when I was 13.I'm not certain this is really associated with the problem. Photographs of me around this time show a remarkable change in my face over these 3 years.The condition was progressing and active between age 10 and 13. It has remained fixed and dormant since with no neurological problems. The condition affects the RH side of my forehead and scalp also. The 'Coup de sabre" mark would be clearly visible excepI'm probably going to be changing my email address soon, My husband and I work in the USA at the moment, and we will be leaving here in the next few months. I will advise you of the new address. I can forward a picture if you wish, where to? JONSTONE@MART!51 Kiwi Esplanade, Mangere Bridgehooloovoo_@hotmail.com"A 'crease' on my forehead, atrophyxa tiny patch (about the size of a 5 cent coin is blonde and frizzy, while the rest of my hair is dark brown and straightMSensitivity to light and sound, visual disturbances, trouble speaking, nausea:On the left side of face and head, doctors havn't named it2Not sure, but I had braces on my teeth for 3 years?left side of lips on top and bottom are thinner than right side8hair doesn't grow as fast or as thick on my left eyebrowTusually only during migraine, but my left eye gets tired more quickly than the rightXHad tonsels removed, complications during surgery, happened around the time of PRS onsetBLK 435 YISHUN AVE 6 #09-2102 Singapore760435donb@blackmood.comKI DON'T REALLY KNOW THE WORDS TO DESCRIBE. NO DOCTORS HAVE DESCRIBED BEFORENECK AND SHOULDER ACHES. SOMETIMES FEELS THAT THE VISION OF MY LEFT EYE IS POORER. SOMETIMES I SEE THAT THE WHOLE PLACE IS LIKE A WAVE PASSING. SOMETIMES I CAN FEEL SOMETHING RUNNING ACROSS MY HEAD.iIT'S ON THE LEFT SIDE OF MY FACE. SOMETIMES IT AFFECT MY JAW THAT I CAN'T OPEN MY MOUTH. AND I GET SPASM.AS MENTIONED ABOVEaSPASM OF THE LEFT SIDE OF THE TONGUE. WHEN I STICK OUT MY TONGUE, IT'S POINTING TOWARDS THE LEFT.I'M NOT SURE IF THIS IS RELATED TO PRS, I'VE GOT SWALLOWING PROBLEM. INTIALLY, I EASILY GET CHOKE ON RICE OR SMALL PARTICLES LIKE BISCUITS. I'VE DONE INVESTIGAIONS AND WAS TOLD THAT MY ESOPHAGEAL MUSCLES ARE WEAKI DID NOT GO FOR FURTHER CHECKS ON IT AS I DEVELOPED WAYS TO PREVENT MYSELF FROM CHOKING. NOW, I TAKE EXTRA EFFORT TO MAKE SURE I SWALLOW PROPERLY. AND THUS I DON'T GET CHOKE AS OFTEN.EMG, FLUOROSCOPYACCUPUNCTURE-I'VE STOPPED AS I DON'T HAVE THE TIME TO GO. I FELT IT'S QUITE EFFECTIVE. BUT DURING THE TREATMENT, IT'S RATHER UNTOLERABLE. PHENYTOIN AND ANAREX- I ONLY TAKE THESE PRN. I FIND THAT IT'S EFFECTIVE AS WELL.I'm Serene Oh from Singapore. I think I've missed out something which may or may not be relevant. I had a lipoma removed in late 1997. It's located near my right scapular. Guess that's about all. Really hope to hear from you soon."41 Sheriff Road Robindale Randburg Johannesburg South Africa+27 11 7825255 (h)madeleine3@freemail.absa.co.za21)Acrylic (that's the substance the surgeon told me- I was 16) fixed on my skrull and shaped to fulfill the loss 2)Realignment of the 2 jaws by provocative fractureI am waiting for a 3rd one who consists of a soft tissue layer taken on my back to be fixed directly on the inferior jaw to increase the angle of the jaw. To increase the size of my cheek, my surgeon advise me to have fatty material injectionsMaria BattagliaStudnetIt just started a week ago.5C. Moodyfirst symptom was vitiligo around mouth and nose- He was 4 years old and I took him to an dermatalogist and was told to not do anything but watch it. 12-14 months later, I started noticing the atrophy of the face on that side. At times his face looks likeCatherine Parramore white - u. kprimary school teacherduring each of 4 pregnancies.slows down during pregnancy. After birthHgiving birth and periods of stress are sometimes followed by a flare up. Ellen Foleymother, landscape designerBasically, when my hands get cold, the ends of my fingers get numb and whitish. It doesn't necessarily have to be cold out. It can sometimes happen when I am holding a cold drink or if I am in very cold air conditioning.371 Shannon Bird:I ussualy changecherry red colour by just standing outside methotresatederek tyler albertsonelementary school studentJamie WilkinsonReal Estate agent30+ Eileen Burnsscottishself-employed part timeNot as bad now but had terrible problems with feet and hands from a teenager. Colour in hands didnt change but were often very cold then very hot at other times. Feet would change colour also legs seem to have terrible circulation at times, particularly with M.E.|PROBLEMS WITH CLICKING ETC HAD PROBLEMS RECTIFIED A FEW TIMES WITH I THINK IT WAS AN OSTEOPATH AND CRANIAL SACRAL THERAPIST.+27 83 784 1005for_piglet@hotmail.com`My top lip on the left was discolored and there was visibly less tissue there than on the right.I occasionally have spasms in my neck on the left side which causes the gland behind the ear to inflame and is very painfull. It usually only lasts a few seconds. My left ear is also very sensitive and the slightest bump can be very painfull.DThinner lip on the top left side and no facial hair will grow there.HNot so much my vision but my left eye is slightly lower on the left side9My left ear is noticably smaller with little soft tissue.iHave had large fatty tissue taken from my back on the left side and grafted from within to my left check.!18 St. Tropez, 93 Wierda Rd. EastSandtonGauteng2196082-332-8293 (cell)rcee7@yahoo.comno problems just a very skeletal looking face but on each side not just on one side. I do experience dull aching pain in my< left leg but that's about it.haven't been to a doctor about headaches, they seem to hit me when I concentrate really hard like doing crosswords or reading intensely, get motion sickness at the slightest movements,this only started four years ago, no aerobics as I get nauseous and I hWell actually that's hard to say. According to optometrist I have perfect vision but I see tiny black spots floating around when I look at a solid white surface.. I also feel a tingling in my eyes(both)and they will run water at the inside corner which if I apply any pressure to the area it hurts.;I am just beginning my journey, nothing done at this stage.UI am scheduled to have fat injections upon consultation with my third opinion doctor.VI say no but I have often wondered about the meningitis that occured at the age of 12.I don't have very good sight, but I see better out of the eye on my affected side than the other, but I did have surgery on my right eye where the doctor was trying to pull the eyeball out more, stretching the optical nerve (tried twice)so he could build the bone up around the eye. Because of that surgery, I can no longer move that eyeball, or blink, which causes me to have to use salve to keep it from drying out, so I don't use it when I have my glasses on.Before diagnosed, is was sent to a chiropractor. I had fallen and hit my chin just before showing signs of the disease, and my doctor thought I might have injured a nerve or something which was causing the difference.qAs mentioned before, I fell down the stairs and hit my chin. It was shortly after that signs of Romberg's showed.My Romberg's was active for only a very short time, but was very aggressive. I had my first reconstructive surgery when I was 7 years old. Signs showed when I was three, but damage was very evident by the time I started school at five years old. Seemed to703 Downing Drive Richardson75080(972) 783-9512assistforu@aol.com Over the years, headaches have come and go. Since surgery 4/13/01, the pain has decreased significantly. I have been treated for migraines since my early 20s. In Nov/December of last year, my forehead and the crown of my head began to hurt a lot, and thDoctors keep telling me they "can't understand" why my forehead hurts! I did have a neurologist tell me earlier this year that I have a severe case of TMJ (which was confirmed by an MRI of my jaw) which he believed was the only cause of the headaches.PI had a 3-D CT scan done of my head; and MRI of my brain, and an MRI for my jaw.I had a Parry-cranial flap procedure; the surgeons removed tissue from the top of my head, and transplanted it into my forehead, and excised the scar on my face. There is now a single line scar (that is still healing, slowly), and the caved-in appearance XI suffered numerous head injuries as a child, which required stitches a couple of times.I was under a very significant amount of stress, working out of state on a trial, at the time my forehead and head began to hurt and burn (this was in Nov. of 2000). When I was 14 and it initially appeared, I was also under extremely emotional stress.TMJ - my neurologist advises my TMJ is a result of PRS (Parry-Romberg Syndrome). In the 1980s, I was the founder of the first Texas chapter of the United Scleroderma Foundation (USF). At that time, there were very few people within the organization that "At an early age I was labeled a child prodigy because I started playing music at the age of 3. During the first decade of my life, I was a victim of severe child abuse; the State of Texas permanently removed me from my adoptive parent's home when I was 11I would like to know if others suffered a single (or more) head injury(ies) as a child. I have read on the NORD web-site that this is one common factor among individuals with PRS. I am in the process of starting a non-profit organization with a lady in NY6647 So. Clarkson St. Centennial80121 303-730-7399prmedina@hotmail.comdark mark down the center of my face from my forehead to my chin and right half of my tongue is smaller, teeth on right side were crammed together when I was a child, wore bracesthe teeth on my right side were crooked and on top of each other, have very little bone left to hold the teeth in, have upper dentures, lower right side no molars left plus 3 or 4 others, gums bad,Fhad to have gum surgery in 1977 on lower, couldn't top, but lost teethright side smaller^right eye is lower but have corrective glasses to raise sight up and focus both eyes together.right side of tongue smaller%lower eyelashes missing on right sidei am very pleased that someone is taking an interest in Rombergs especially for the sake of children & young people who will have to endure living with it through the years where looks are so important (teens & twenties). my local GP had never heard of Ro17 Kitchener Street,Wishaw LanarkshireML2 7JQ 01698 355138scothealth@aol.com&Not seizures - shaking when she had ME@more coming from eye and forehead deep throbbing makes you dizzy'left nasal and forehead also inside eye3a lot of dental treatment particularly on left sidea lot of eye problems, typical dilation plus became aware of soft eye about 3 yes ago, hypotonic eye, choroidal folds at posterior, psuedo pterygium since i was about 19bBasically more eye problems have been used in a bit of research by Dr Dudgeon, Gartnavel Hospital.9some sort of scan done on eye in aberdeen royal Infirmarydiuretic for eye didnt work?mums side of family had problems with bone growth over ears etcafter diagnosed0psuedo pterygium started about same time as M.E.As I am from Lanarkshire I would be willing to assist with research, I have a lot of my own medical noted regarding this condition.Hi I have never had epilesy although I have suffered shalking and a lot of twitches etc particulary in the early years of my ME and when it was quite bad.I had a starnge experience when I wa on an antibiotic years ago, I had collapsed in bathrom w, Family queries. Is it just a straight line?Melrose The DriveBurnham On SeaSomersetTA8 2PH 01278 788584halsey@126thedrive.fsnet.co.uk=Thinning on right side of upper lip. Leads to a crooked smileHas Duane's syndromeFThinning of the Right nostril and a line along the chin -coup de sabresurgery booked for August 01TFather suffers cluster headaches and uncle (Fathers brother has trigeminal neuralgiaForceps delivery with mark to R side of face. Left eye effected by Duane's syndrome.Currently under the care of Mr N mercer at Frenchay Hospital in Bristol.Sylvie and family are pleased to hear of your research and offer to be of any further assistance.We beleive there are few cases in G.B.Thanks239 DITCHFIELD ROADWIDNESCHESHIREWA8 8HYWIF93@YAHOO.COMXI WAS TOLD I WAS BORN WITH THIS CONDITION MY FACE HAS BEEN DIFFERENT ON ONE SIDE ALWAYS.HAT THE BACK OF MY HEAD AND UNDERNEATH I DO NOT KNOW IF THIS IS RELEVANT.HNONE DO YOU MEAN JERKING FOR THE QUESTION UP ABOVE IT YES EVERY SO OFTENTHE HEADACHES VARY ONE IS LIKE MY SKULL IS CRUSHING IN AT THE SIDES. I HAVE BAD HEADACHES OVER MY TEMPLE NOW DUE TO THE ATROPHY STARTING ALL OVER AGAIN..JAW ACHE, PAIN IN THE RIGHT EYE, FEELING TIREDBEFORE MY OPERATIONS I HAD FACIAL PAIN ON THE RIGHT SIDE AND A LOT OF TWITCHING WHEN THE ATROPHY WAS MOST ACTIVE. NOW I ALWAYS HAVE FACE PAIN AND TINGLING DUE TO THE OPERATIONS=TEETH ON THE RIGHT SIDE ARE DIFFERENT PLUS GUMS ARE DIFFERENT}MOUTH WAS TURNED UP BEFORE THE OPERATION AND WAS DISCOLOURED IN THE CORNER BROWN. I ALSO HAVE A HOLE IN THE ROOF OF MY MOUTH.JEYBROWS ARE NOT EQUAL HAIR TAKES ITS TIME TO GROW IF AT ALL VERY SENSITIVEMY RIGHT EYE IS TURNED IN (I HAVE BEEN ARGUING WITH DOCTORS EVER SINCE I CAN REMEMBER THAT THE EYE IS CONNECTED WITH MY PROBLEM. THEY HAVE NOW ADMITTED YES IT IS AND IS NOW DETERIATING MORE I AM LOSING THE SIGHT IN IT MORE EACH DAY.AFTER MY FOURTH OPERATION I WOKE UP WITH DOUBLE VISION WHICH IS NOW PERMANENT UNTIL THE ATROPHY HAS FINNISHED THE EYE OF ONCE AND FOR ALL. I ALSO HAVE NOW BEEN TOLD I HAVE A R< ARE SPOT IN THERE. THEY CANNOT SEE RIGHT TO THE BACK OF THE EYE.8SIDE OF THE TONGUE NOT THE SAME SHAPE AS THE OTHER SIDE._I HAVE HAD MANY AN EMOTIONAL TIME TRYING TO EXPRESS MY CONCERN OVER THE EYE. NOW IT IS TO LATE.EARS CAN BE PAINFUL. AS I HAVE MENTIONED MY ATROPHY HAD SUPPOSED TO HAVE BURNT IT SELF OUT. IT HAS NOW STARTED BACK UP ATTACKING MY EYE SOCKET AND TEMPLE AND I HAVE A FEW SPASMS WITH MY CHIN NOW.Nervous systemEpilepsy query58 Clarence Road, RayleighEssexSS6 8SQ 01268 772930wyatt@clarence.fsnet.co.uk;Dark smudged appearance on skin (chin) - bruised appearanceAn aching feeling on th eleft hand side of my face, in my chin, cheekbone and by my ear. Sometimes I feel tightening sensationsQNone other than recent photographs to compare with more to be taken in the future Post partum8Lower back also, left side, ribcage on my left hand sideI've had this syndrome which has lain dormant for many years . Since having 2 children and having natural menstrual cycles other areas of my body and face have been affected. I have now returned to taking the combined contraceptive pill in the hope iot buSpoke at length on phone.Dapple Lea, Mill Road PeasenhallSuffolk IP17 2LW 01728 660527Line then a darker pigmentPhenobarbitone as a child. Constant dull headache. Intermittently very intense pain over right eye. Nausea, photophobia, has to sit upFeels weird - load of cementDentures when 11.Thin on right side.Right eyebrow - hairs don't start until middleScar tissue on right eye - canWasted on right$Bald patch where rombergs is in head2Mother's side had Huntingtons Chorea, Mum diabetic&? Measles and Scarlet fever age 5 or 624 Worthing Road East Preston West SussexBN16 1AZvickinorrell@hotmail.com#Very Uneven on the upper right side Severe Wasting of top right sidewhitening of hairJWasting of right side of tongue (once described by a doctor as impressive)nI have hair loss the size of a 10 p on the right hand side. White patches of skin on back of neck and foreheadmy aunt has a cleft palateI was hit in the forehead (right side) by a ball and the symptoms appeared as the bruising went away. The bruise lasted well over 6 months70 ARDEN ROAD RUBERY REDNAL BIRMINGHAMB45OJA 0121 6245456gmccarron57@currantbun.com5HAIR LOSS SMALL BALD PATCH ON RIGHT HAND SIDE OF HEADtSICKNESS, BLURRED VISION, LOSS OF APPITITE, SHAKES, DOTTED VISION,SEVERE THUMPING IN FOREHEAD AND BACK OF RIGHT EYE.-TINGLING AND NUMBNESS DOWN RIGHT SIDE OF BODY&RIGHT SIDE, DOCTOR HAS NO EXPLAINATIONWDENIST ADVISED ME THAT MY JAW AND TEETH WERE OUT OF LINE PROBERBLY DUE TO MY CONDITION.6THE TOP LIP ON RIGHT HAND SIDE SEEMS TO BE MORE RAISEDKDENT ON FOREHEAD BY EYEBROW ON RIGHT HAND SIDE AND PART NONE GROWTH OF BROW1CATTERACT IN LEFT EYE BLURRED VISION IN RIGHT EYECORRECTIVE SUGERY WAS UNDERTAKEN AT WORDSLEY HOSPITAL STOURBRIDGE BUT WAS NOT A COMPLETE SUCCESS, NO-ONE AS BOTHERED WITH ME SINCE.?COUSIN HAS DEFORMATY OF CHEST BONES/ COUSIN WITH CERIBAL PAULSYINDENTATION ON RIGHT SIDE TOP HEAD, THROUGH FOREHEAD, EYEBROW AND NOSE. NO GROWTH OF HAIR WHERE INDENTATIONS ARE (HAIR, BROW, EYELASHES. THE SPECLIALIST WHO WAS DEALING WITH ME AS A CHILD ADVISED MY MOTHER THAT IT WAS CALLED A (COUPE DE SABRE) THE EASY WAhI WOULD LIKE TO LEARN MORE ABOUT MY CONDITION AS I DONOT UNDERSTAND WHAT IT IS OR WHY. TEL 0121 244 6334The prednisone and Imuran medication were actually given for polymyositis which I developed after taking and antidepressant called Serzone3415 Havershire Dr Missouri City77459 281-208-1927kathymac@pet.med.uth.tmc.eduAfter a year at my current job (1996), many co-workers kept asking if I'd been "hit" or been in an accident because my left eye and left cheekbone seemed to be "indented" and "bruised". It had been so prior to that.My hair is not different colours, but I actually am missing hair. I have a "bald spot" the size of a half dollar that also has a crooked "line" (approx. 1/4 in. wide) leading from it to my forehead that is also missing hair.Steriod drip. 1 gram a day for 3 days the reconstructive surgery was to close the gap of my missing lashes. I would like to know if it is possible to have reconstructive surgery for the fat missing in my brow and forhead.When I was 18 I developed optic nuritis. But a very atypical case. It VERY slowly progressed over a 6 month period- untill my once perfect sight was so far gone I could only tell light from dark. After 2 treatments cycles of solumedrol, 1 gram a day for 3When I was 3 years old I lost my eyelashes on the right eye lid. I had no injury or noticable infection, they slowly fell out. and the eye lash folicals are also gone. A biopsy of my lid found scar tissue on the inside of the lid. No cause was determined 4106 W. 87th StChicagoIllinoisUSA60652 773-838-1243auntie_5@yahoo.comAJaw is smaller on the affected side causing crowding of the teethULips are affected by the atrophy. One side of the mouth looks smaller than the other.1Affected side of tongue is smaller than the other.Trauma to chin at age 3, requiring 8 stitches.Thanks for co-ordinating survey 4505 ALPINE ROSE BEND ELLICOTT CITYMaryland21042 410-461-0620rita@bietry.com%? MIGRAINE OFF/ON.HEADACHES ROUTINELY(FACIAL PAIN RADIATING ALONG ROMBERG LINE$? PAIN AND SENSITIVITY ON RIGHT SIDE2? DISCOLARATION AND LESS HAIR IN THE AREA AFFECTED(? PAIN IN MY RIGHT EYE WHEN UNDER STRESSE? MY CHIN ON THE RIGHT SIDE OF IT HAS THE SAME INDENT AS MY FOREHEAD. Bone Scanp? PECTORAL MUSCLE WAS BELIEVED A POSSIBLE EFFECT OF POLIO. THE FACIAL FEATURES STARTED AFTER MY FIRST PREGNANCY.? THANK YOU FOR TAKING THE TIME TO DO THIS SURVEY. i DO HOPE IT WILL BE A USEFUL RESOURCE FOR DOCTORS AS WELL AS A STARTING POINT FOR OTHER RESEARCH.IF YOU HAVE ANY FURTHER QUESTIONS PLEASE FEEL FREE TO CONTACT ME.aAge of onset 31. Diagnosis age 6. Description of lip problems. Left chest right face double check189 Clay Hill RoadHartlandVermont05048Tammie.DeGrasse@Dartmouth.Eduhsometimes the nerves twitch on the affected side of my face. Feels like there is a burning there as well(gums appear to be receeding on left side lips very thin on left sideC have a "bald spot" on right eyebrow- where the en coup de sabre isk? left eyelid doesn't work well, too much atrophy around eye. Vision seems to be getting worse on that sideC fat injections to the left side of my face to even out the atrophy? I have also had Systematic Lupus Erythematasis since I was about 13 years old. I don't know if they are connected or not, but it seems that way as in Lupus, the body attacks itself.My face is affected on the right side of my forehead, and on the left side. The left side was mostly the chin, but has progressed up into the cheek and around my eye. Lupus diagnosed on bloods and symptoms too-Right forehead, left forehead, cheek and chinfIs she sure it affects both sides of face - see answers to face pain? How was diagnosis of Lupus made?63 Second AvenueRoebling New Jersey08554 609-499-1536yankee11@att.netChange in Chin'Probllems with teeth'See email from John Tully2Handedness? Upper or lower face? Teeth Description415 dale avenuemchenry60050 815-578-1028DEZZIE7@aol.comGdent running the length of my head and down my forehead. Coup de sabre.I have not had a migraine since 1984. I used to have the bright lights, I'd throw up, then sleep for hours to get thru them. I will answer the following as it was when I did have them. Evry week in pastthe teeth on the right side, seem to be falling out. I have only 2 bottom teeth on that side, and 3 top teeth have been replaced.<top right lip is very thin I'm e mailing you a picture of methe right one is less hairyQboth of my eyes are getting worse quite fast. Not sure that it is related though.discoloration under my eye. When I squint in the sun, my right eye doesn't close. the right side of my face is thinner than the left. The eyes socket is different.just one x ray]my dad died of a b< rain heamorage as did his dad. Do you know if this is related to romberg's?9bad soccer accident, after I was diagnosed with Romberg'suI noticed it during my third pregnancy, don't know if it's related. No significant change during the fourth pregnancyI fill out your survey and would like to send you these two pictures taked > today > [Unable to display image][Unable to display image] >I really haven't noticed much change recently. I used to think it was stress related, but I've had alot of stress this past year with no apparent change. Thank goodness. I was a British citizen til 18 months ago. Was born in Iraq (oil field) don't know if$Pictures did n't come out - re-email'Dad died of haemorrhage - query related404 Rattan Dr.Texas77901(361) 576-3225BrightAngela@aol.com4sensitivity to light and niose and intense throbbingleft sided face pain at times near the cheek bone ...went to doctor he called it left sided face pain doesnt feel it is trig. neur.dizzines most days esp. when getting up fast but it isnt r/t BP (it was checked varios times to see if orthostatic and its not) I do have a brain lesion on the right(unaffected side) posterior horn internal capsleUI do have a brain lesion on the right(unaffected side) posterior horn internal capsleRhit head on diving board when i was 13 and got stiches it was the top of left sideDr. Stone would you please email me at brightangela@aol.com and tell me what does the posterior horn internal capsule control....what kind of s/s would I look for if the lesion is worsening?u Hi! My name is Angela and I have PRS. I tried to look at your website, but it said it was down. Can you send me infoGave web address2418 Cedar Hts. Dr. Cedar FallsIowa50613I do not know if this was due to the headaches or what, but the last one I had for a little over a week I had a continuous bad taste in my mouth and kept smelling something very unpleasant.I do not know if I had pain when I was very young, but in my late twenties the symptoms got really bad with the facial pain. My right side of my face has always had a dull ache on and off that gets to be very annoying because it is so painful.I was told it was not trigeminal neuralgia, but that did start to happen in the last few years and I was put on Neurontin. I was put on that med also for the pain and weakness in my legs.I had four teeth on the right side (adult teeth), two were pulled when I got braces. They are very small and have little to no roots.They amaze my denist to this day because I still have them. He states that because I take such good care of my teeth that they have not fallen out.^On the right side the upper lip is smaller than on the left side. It is sorta like a cleft lipASometimes I see spots, but my vision has always been rather good.The line down the tongue is not straight and it is more on the right side than in the middle. Also there is an indentation on the right side that is very pronouced. Sometimes the right side can tingle or have pain.#ErrorThe worst symptoms are pain. I get body aches that are horrendous. I get fevers all the time, sometimes when I just have pain and no other symptoms. They are usually low grade, but I feel as if I am burning up. My immune system is impaired and I believe m2301 E. Francis StOntario91761 714 2675390kate 102@socal.rr.com:My 'en coup de sabre' is actually on the crown of my head.%The hair in that area has never grownSince, I've gotten this disease, I got glasses and soon after that I had to get a new prescription because it was changing so rapidly. There are days when my eyes are more light sensitive than othersn? constant, they wont go away. its like someone putting a clamp on my head and tightening it. ? Migraine_SideBothExtreme fatigue and DepressionE? my eyebrow separated with the dent then my hair started falling out? the vision in my left eye is weaker than my right. i need glasses for any work. i have to have my eyes checked everyyear because of my condition.{? my hair on my head. when my dent started moving back towards the back of my head sections of my hair started falling out.I saw my specialist yesterday.Hhe said the operation went well and he's using me as a case study.He said only a couple of other people have had the artificial bone inserted, and mine has taken well.v? i had 3 injuries to my head before i was 5 . 1st i ran into a corner of the wall. 2nd the pool gate slammed into me-this required butterfly clips 3rd i had petit mal and fell into a coffee table edge this required stitching-- all on my left side.INJURY - STITCHES0? i think the head injuries could be responsible? my doctor DR Anthony Holmes(Melbourne Children's Hospital) has done a lot of research into Rombergs and has lectured in Chicago, he thinks Rombergs could be a mutation of the Herpes virus.IS the scleroderma a straight line? The atrophy seems to go diagonally, looking at my face from right to left. Its not jagged but a straight line, as if being cut with a sabre ( I suppose hence the term coup de sabre).21 Lucinda AveWamberal2260 02 43852706lizzyt60@hotmail.com loss of tissue in left cheekHazel? Have only ever had 1 seizure which was described as a grand mal.Doctors could not determine wahta caused seizure and the treating neurologist never asked me about Rombergs.B? was taking epilem for a period of 2 years after seizure. nil now1left side of face. has not been treated by doctorSweak bone structure in left jaw, most molars have either been removed or fallen out(left lip area sags and i have no feelingH left eye waters alot more than right and sometimes have blurred vision.INJURY - HEAVY FALL[ i had a heavy fall on the left side of my face and the rombergs seemed to start soon afterM? I am just so happy someone is finally researching this, and I wish you wellHi Jon, Im sorry for sending a blank E-mail, I not quite too sure how I did that. I was just going to let you know that I will be in Scotland from the 29/7 to the 14/8 and if there is a convienent time to see you during this time. I am really not expe 13 Oak StreetDubbo2830 02 6882 5563piprutherford@hotmail.comTMy teeth do lack enamel but I don't know whether this is connected with the RombergsDiagnosed by an eye specialist -chronic cyclitis in the right eye with fine K-P and a slight aqueous flare and the typical heterochromia due to atrophy of the iris pigment epithelium on that side._I also have anisometropia, the right eye being more hypermetropic. I have no signs of glaucoma.I have scoliosis and have just had major back surgery to correct secondary spondylolisthesis. I had a rod and two screws inserted on the right side and a spinal fusion on the left side. The doctor would have liked to insert a rodon the left side but found the curvature was too great, hence the fusion. As I have slight muscle wasting on the right side of my back I do feel all my back troubles have been associated with Rombergs.If you would like to know more I would be only too willing to help you. Most doctors I confront have never heard of Parry Romberg Syndrome.Vision problems, some strange sensations on the rt. side of face, have had 15 fat injections surgeries on the rt side since age of 24.I also have rheynods syndrome, with no other attached diseases.*have had no tests run except, blood tests.INJURY _SURGERYat the age of 14, I developed a fatty tumor (benign) on the left side of my chin develop, I had surgery by a general MD to remove the tumor and immediately the rt. side of the chin was indented, doctor thought he took too much tissue from the right sideAfter my tumor removal surgery, I had to more reconstructive surgeries to try to repair the rt. side of the chin because of the indention, which where unsuccessful and doctors thought they were causing nerve damage to my mouth, so they quit,The Parry-Rombergs progressed from then on, but very gradual until after the birth of my two sons, at the age of 21, the progression became very active and I had lost almost all of the fat tissue fr< om the rt. side of my face until I started the fat injectI hope that you will be able to get more awareness about this condition out to the medical world, because many are still getting diagosed with this and there are no answers as to where or why this disease is occuring in just a few patients. Also maybe thi1550 Eastshore DriveAlameda California94501 (510) 8141963s.moler@mindspring.com:The right side of my tongue is smaller than the left side.*I am adopted and don't know any relatives.General thanks912 1st Ave. W #7Newton50208 641 791 0581frank@iowatelecom.netI first noticed the change in skin color. When i was diagnosed with atrophy in my right leg (Gastroc nemious) I realized I have had trouble with that leg all my life.TI have a bare spot on the atrophy side (left) slightly above and in front of my ear.Muscle spasms in the left side under my chin. I had the first one after an incident when I was 16 and I bumped my head on a car door on a very cold day. I hit the spot mentioned above where the hair is missing and suddenly my chin knotted up very painfull`What is trigeminal neuralgia. I have the muscle cramping/spasms in my chin and that's about all.'Teeth on the left side turn in slightlyELower lip has some atrophy and the top lip has a slight crease in it.I have some recent atrophy in the pectoral muscle on the right side of my chest. When trying to investigate this disorder I was told that for some adults who may have been exposed to polio as a child they may have a reactionto one ooof the meds that may cause leg problems. I was given Gamaglobulin when I was 4 yrs. for what may have been polio. That still wouldn't explain the facial atrophy?Spinal tap, EMG, MRI, EEG, EKG,mega x-rays. I'll sign a release and you can have a look. Contact the Mayo Clinic and University of Iowa Hosptols and ClinicsDidn't see a doctor - see aboveI really feel that my facial problems were caused but the bump on the side of my head from the car door. There never was any lump or anything but I hit it vey hard then experience a severe spasm in my jaw. I was about 16 years old. The rest symptoms start:I'm your guinea pig. If i can offer anything, let me know.620 S. Oak St.Manheim Pennsylvania17545 717-665-7154cmusser@ptdprolog.netGIt is on the right side & only occassional...a 2 on the 1-10 pain scaleI also had some small lumps along the line of my jaw at my ear. He said they were not associated with this condition, removed a few, sent them to pathology.8They were only enlarged lymph nodes & have not reoccuredThe doctor who diagnosed me (a plastic surgeon) took regular x-rays & some pictures. Took them to a medical convention & then came back with the diagnosislSmashed a car window with my face in a car accident but this was 7 years after the symtoms had already onsetxThank you! This condition is so rare there is no money for research. Anything you can do to help us is much appreciated.ThankyouChristina Mangognia616 HAZELCREST DR. PLAINFIELD60544 815 577 7754no email and phone doesn't workphotophobia, dizziness+full photo workup inc 3D photos, ?? CT scan8 Graham Street Boat Harbour2316 02 49 819363sjmmitchell@ozemail.com.au{At 12, my face started to become crooked, particularly my top lip - right side, and my cheek on the right side was sunk in.OVisual disturbances, spots before my eyes, nausea and intense pain in the head.rI used to get them all the time - every week to a fortnight, as described above, but they have thankfully stopped.Right upper side teeth are very brittle and I have unhealthy gums - I have lost 4 teeth from that area and the back 2 molars are just hanging in.I used to experience severe cramping - my jaw used to snap shut and I would not be able to open it and it was very painful - not to mention embarassing - and some of the teeth that I have lost were fractured from these cramps.#Top right hand lip just isnt there!Right eye is sunk in and as I get older the vision in that eye is deteriorating rapidly. A scan showed a shrivelled optic nerve. The other problem is a permanent blur - I was tested for brain tumors when the blur appearedThe blur is in the upper right quadrant of the vision in my right eye, and according to the specialist I saw at the time, due to.. See belowI have been told I have the coup de sabre in my tongue - a slash on the right side of my tongue and that side is thinner and smaller.`atrophy of the blood vessels feeding the eye, these vessels stayed shrunken due to the migraine.Facial cramps, described above where my jaw used to snap shut and was impossible to open, with severe pain in the right temple. It would happen at any time - every day. My hearing in the right ear is not as good as the left one.I had reconstructive surgery in 1979 which involved a fat transplant and I tried again in 1991, the fat (what was left of it) was removed and I had a flap taken from my groin which was transplanted to my cheek and has its own blood supply - connected to vdMy son suffered "chucklers" - which they told me was a child hood epilepsy - he has grown out of it.I have lost all hearing on my left side d/t a choslestoma in the left ear. However, I have just been diagnosed with another choslestoma in my right ear within the last month.MRAWhat I found to be remarkable was that when I had orthoganathic surgery to pull both my upper & lower jaws out to correct malocclussions, the PRS seemed to exacerbate.Lupus Autoimmune Disorderswhen I was a toddler, I fell & hit my head where the left eyebrow forms, this is in the area of the PRS. However, it is only in the beginning area. My temple , cheek & eye orbits are also affected.I do NOT have the mark of the sword. I do have a small indentions under my left eye. This is also the same place that a drain was inserted in order to save a plastic cheek implant, unsuccessfully. 3929 TacomaIrving 75072-72381-972-252-1365maeceil@yahoo.com,Two blue lines on the left side of forehead._I have a bald spot on the left top of head,that runs down to forehead.Hair is dry in that area.The doctor described them as migraines. The only thing that helps are pain pills and to lay with my eyes closed. Sometimes they last for days. I have been to the point, I nearly go blind and, I am very nauseated. Doctors just wouldn't believe me,Some times my forehead and eye will swell, on the side I have Rombergs, during the headaches. And sometimes it will swell even if I don't have a headache.VI have facila pain on the Rombergs side. All they say it's probably from the Rombergs.&My lip is smaller on my Rombergs side.'I have no eyebrows on my Rombergs side.2My eye is smaller and weaker on the Rombergs side.Since 1980, when I was about 41, I really started having back problems. The cartilage is going away in the bottom 5 disks. This has created some problems with my back and legs. I really believe this has something to do with the Rombergs.:i have to where glasses. one side is worse then the other.$left side slitly smaller than other.iAfter i got this I had learning problems. i halso had to sart wheiring glasses, amd my teeth got crucked.Cabout to have reconstructive surgery. Houston texas Mamorial Hurmanmy grandmother my brothermy jaw2a swimming accident involving my jaw at age 7 or 8i was perfecly normal when i was born. I was involed in a swimming accident when i was 7 0r 8 years old involving my jaw, it left my face blue looking for one year, i had sivier head ackes after it happened latter my familey noticed that my left side of mthe only comment i want to make is i am willing to become a lab rate to stop this disease. i am willing to talk to people and have my case researched. MY # 281-355-5240.7067 APPLECREEK COVEMEMPHISTN38125 901-759-0021hope41171@yahoo.com;USUALLY STARTS ON LEFT SIDE AROUND MY TEMPLE OR OVER LT EYETEETH AREN'T ALLIGNED ANY MORE.9LEFT LIP IS PULLED UPWARDS FROM THE TIGHTENING OF MY SKINEYESIGHT IS POOREYE RUNS WATER FREQUENTLYAUTOIMMUNE HEPATITIS, ITP, DJD< 2901 SW 41st Apt 905Ocala34474 352-237-7335Silli1269@aol.comHmmm I do onot know what trigeminal neuralgia is, but I do get pain in my face. One of the doctors I have seen said it was just nerve damage from the surgerys. TeethjReally not sure if its my condition or it just is! My right top lip isnt the same as the left its smaller.vThe first year I had eye tests, blood tests, MRI, brain tests..I think I saw every kinda of different doctor there is.fMy mother has hasmotos ( Thyroid ) and ruematoid arthritis my grandmother and great G have/had Ra too.(Stress of planning my wedding ( I think)I was born with what they had thought was a birth defect, where my right side of my face just didn't quite finish developing. ( so I was told). When I was 25 I noticed my "dent" getting worse. I actually went to a dermatoligist about my hands, because theWell I haven't been able to find any connection with Parry romberg and this but here goes. I have been seeing doctors for the pass year. Unexplained nausea...bad nausea that wakes me in the night..that comes and goes sometimes days or weeks non stop and tdThink I just about covered everything, and then some! Thanks again! I hope I helped you in some way.3160 Stratford Green PlAvondale Estates30002 404.713.3560Heidi.Febles@cingular.comMy doctors never diagnosed why I had seizures. I didn't know until I started reading that it might be related to Rombergs. I have not had one in a very long time.<constant pain starting at the base of my neck up to my eyes.i'm not 100% sure but the reason I have started researching again is because my dentist is asking me about the disease. He couldn't find anything on it. He feels like my alignment is off.;my lips kind of go crooked on the side of my deterioration.`My face twinged every once in a while and I never thought about it until I started reading info.+headaches and the discoloration of my chin.7914 Pine Island CtBelmont49306 616-887-1629abennett@otterbase.comE2 gand-mal and now semi-partial while on the anti-seizure medicationsi3 different... I have been try many different kinds and none are working to stop the seizures completely.jittertwitchFcan't handle bright light and my vision jumps and it is hard to focus.Left-side has become weak over the past 6 months or so. My left hand grip is 20 lbs less then the right. Left hand index finger is gone numb and parts of my hand will also but unlike my finger it will come backzMy seizures are always on my left side. My face twitches on my left side but I have lost fat in my face on the right side.Bangiogram of the brain where dye is shot to highlight the vessels.?IVIG - Immino Globine This treatment I am currently undergoing.I was diagnosed my a team of doctors at the Cleveland Clinic Foundation in Cleveland, Ohio USA. I have given your website and report to them. Your patient sound a lot like what I have been going through. I started having Hemifacial switching since Octoberpetit mal and grand mal, totally unaware. seizures have long duration, up to 40 minutes, following seizure, severe headaches, light sensitive. left side involvement, tremors & spasticity, yes doctors have described them5pressure, like a vise, pain from both light and soundAleft side of face,mostly chin area, nothing described from doctorcsmaller left side jaw, teeth overlaped, had extensive dental work, braces, wear a retainer at nightJleft side of lips, especially lower lip smaller, pinched with a white spotXpoor vision but unknown to be a connection, parents have very poor vision as do siblingsJtongue is not symetrical, smaller on left side and have speech impairmentsMy entire left side is weaker and smaller. I have had a heel cord lengthening on my left leg (age 11) and I still have an uneven gait. My right brain function is impaired and I have memory problems.I have clones on my left side especially my leg and balance problems. I have problems learning, more with maths and sciences, I have problems with fine motor skills.How many seizures?2383 Ridge Road Queensbury12804(518) 656-3596Kgoodspeed@Juno.comGBaldness on the back to middle part of my head progressing to the frontAt the time I did not realize that the migranes were related to PRS it was not until I was older - they are pretty rare but usually hit in the fall - My nuerologist suggested a anti depressant but I opted to go with outMy body aches around the same period that I get these migranes - I usually vomit - it is difficult to lift my arms - my body is exhausted this usually hits in the fall and lasts for a month or two.%Doctors have no clue - it is sporadicLoss the bone in the upper left side - bridge loss of three theeth - also no wisdom teeth on left side and 2 teeth did not erruptupper left lip is missing.!hair loss on spot in left eyebrowMNot really my vision but my left eye became permantly dilated this past fall.Just a little atrophyI have spots of atrophy on my back not on the front of my body. I seem to have alot of facial hair which no other family member of mine hasI have the permantly dilated eye - the optomotrist diagnosed me with two diseases of the eye shich he said were related to PRS.iWhen I was little I fell on the ice - ice skating and went to the doctor as my mother feared a concussion PREGNANCY|I mainly had baldness and the coup de sabre until my pregnancy - after that I lost tissue on face and began to lose lip etc._I don't know how to do a picture on the computer but I could mail you one if your interested!!!I would just like to tell you that my doctor - Dr. John Seibert at NYU in NYC has performed many microvascular free flap tissue transplsnts on PRS and he has done studies really only related to reconstruction but he may be helpful to you if you are intere509 Annadale Road Staten Island10312(718) 356-6462adeleliu@hotmail.com*Blindling headaches that require bed rest.VThe teeth on the affected side are loose and are anchored with splints. Also gum lose.Atrophy upper right lipHair, bone and skin lose.=My vision in my right eye is becoming more and more impaired.I think the symtom I suffered the most is the grave indifference of the medical community as to the nature of this syndrome. Most doctors are apathetic to the needs of this small population.And thus have suffered low self-esteem and depression. I will forward to you a recent survey I have conducted via the Rombergs Connection. I think you will find it helpful and very interestingA fall I had as a child.EI fell from a carriage and my baby teeth were sewn back into my gums.Please let us know the results of this survey and if you could possibly be a spokesperson on our behalf. Thank you for taking such a great interest in this syndrome.Spokesperson, Survey info3489 Gobblers Knob RoadWarriorAlabama35180 205/648-3751ymclane@hotmail.comBald spot on scalpULinear scar due to surgery along the entire left side of the head. Surgery at age 16.Treated during this period with Dilantin reaching a maximum of 800 ml per day. Had to be taken off Dilantin due to extreme weight loss. This was due to liver problem caused by the drug.JDuring period of seizures, took a minimum of 300 ml to a maximum of 800 mlTypical migraineSAll teeth on the right side have disintergrated. Teeth on left side are still good.)Loss of eyebrows especially on left side.Problems with left eye. Cannot stand any bright light. Have to wear sunglasses at all times while outdoors or have intense discomfort.Started at 14 with loss of hair along left side. Operated on because doctors didn't know what else to do. Diagnosed as scleraderma. Continued down left forehead through eyebrow and eyelid. Stopped at approximately 19 years of ageHad migraines from age 25 to 30. Seizures from age 32 to 37. Presently experiencing eye and tooth problems. Being evaluated at the University of Alabama at Birmingham. Have just had MRI of brain. Doctors are looking for development of plaque on brain.hDilantin, phenobarbital, valium, for seizures. Ma< ssive injections of of B-12 for skin and scalp problem.TRUE /NOaPossibly my daughter who had optic neuroapathy of the left eye at age 12. Reason never diagnosed. My first cousin has sacroidosis.TAge 2 - severe blow to back of head due to falling over backwards off of park bench.I feel this disease is one of the most misunderstood diseases. For years doctors not knowing about this disease have put me through unimaginable agony. This was due to their ignorance. I am very happy to know that so much more is known of this disease tod1828 Strong AvenueBeloit Wisconsin53511 608-365-7636lbricco@sdb.k12.wi.us"Gustatory Seizures", complex partial - begin with a metalic, medicinal taste in my mouth and then in a seconds a numbing, tingling sensation travels from my tongue down the left side of my body. The seizure lasts from 3-10 minutes - exhausted afterwardsTegretol7Extremely intense pain that begins anywhere on my head.3Nausea and vomiting, sensitivity to light and soundlhRight, upper lip is atrophied and there's a small amount of discoloration in the right corne of my mouth_Right eyebrow has an "indention" in the center of the brow and the hair on that brow is thinnernA large surface vien appeared on my forehead, and I had very poor eyesight in my right and perfect in my left.MThrobbing pain on right side of my head, but doctors have not described them.3UI always thought it was due to the Parry Rhombergs so I haven't seen a doctor for it.I have braces now, I had to wait til I was 18 to get them because they thought they might have to break my jaw, but they didn't.%It's a little thin on the right side.#20/100 in right eye, 20/13 in left. Atrophy to right side of tounge.yI had a lot of testing when I was young, but I don't remember the speciic ones. I know it wasn't any of the one's listed.38901moody5@network-one.comHemi-facial atrophy camouflage8blue tint to that side of lip--looks like hit in the lipall tests have been normalyI have been told that there is no treatment for this disorder. We have been watching it for 4 years with gradual atrophy.3261 Paprika Court CincinnatOH45251 513-674-7827ambecker@cinci.rr.com+I have very little hair in my left eyebrow.God Bless you for doing this. I hope you will be able to find answers; thereby finding solutions and preventions for others. Just knowing there is a DOCTOR out there who cares enough to go to all this trouble is a great relief. May God give you the time t601 S. Vine P.O. Box 494 Waynetown47990cuscal101@hotmail.com PsoriasisThank you for doing this. Finding a doctor who knows anything about this disease can be difficult and frustrating. Hopefully This research will help all of us. Cal.6623 Jodie Dr. StanfieldNorth Carolina 704-8880456mds6623@aol.comChanges colour grand mallGa pain on my forhead and eyes sometime going back of my head to my necklike a numbnessrightall my teeth top an bottom I have ascar in my right eyebrow-my skull is afected on right side doe to neck3I have just lived with it noone knows much about itcousins mothersidegI e-mailed you earlier to see if tou got this .please let me know if you get this if you can thankyouasEarlier email received424 17th AvenueFulton61252 815 589 3070rexwin@essex1.com.Grey Spot left side of forehead in high schoolsFrequent headaches, some severe. Don't know if this qualifies as migraine. NO sickness or light sensitivity with it7Dull Headache - often severe. Occasional Blurred visionDull minor ache2Jaw out of line - had to straighten top and bottomLeft eyebrow droops7Unknown if this is an effect. Left eye worse than right See article10035 Sagewood DrRenoNevada89506 775-971-0767brennmom@hotmail.com is wrongalopeciaoJacksonian Seizures Numbness completely covering the left side of my body, usually followed by severe headaches ! Tegretol@extreme pain, aura, sensitivity to light ,noise, and temperatureSUsually the right side of my head and face. The doctor call it Trigeminal Neuralgia(Weekness and loss of teeth on right sideright upper lip atrophiedatrophy and loss of hairblurred in right eyeatrophy brennmom@hotmail.com wrong email1784 Becker Drive Fort Dodge50501(515) 576-8486patbette@frontiernet.net+Indentation on right cheek below right eye.My left eye is remarkable in that the top half of the iris is brown and the bottom half is the same shade of blue marked by the right eye.My hair has gone from auburn to blondish as I have aged. I have one circular area of hair about 5 centimeters in diameter near the left base of my skull that is very blondish.I have a "sensation" not to be characterized as pain. This feeling is difficult to describe but my best effort would be the say it is as if a spider or small insect were crawling on the right side of my face on the area below my right sideburn.&My right upper lip has lost some mass.7Slight decrease in mass on the right side of my tongue.I have the 'en coupe de sabre on the right side of my forehead. The right side of my head and neck are marked by a generalized decrease in mass with the most apparent being the 'dent' in my right check where most of the sub-q. muscle and fat are missing.Age 19. Ejected during auto accident. Unconcious for 5 days. Result was diplopia ( corrected somewhat by glasses) and diminished coordination of left upper limb.I have many allergies as well as arthritis. I suspect facial hemiatrophy is a genetic problem. My reading on the subject is somewhat limited but I have read reports Rombergs being discovered in Egyptian tombs. I question this but do believe it could have 1Anything on CT scan. General thank you email sent 55 Fidler Rd. Gettysburg17325 717-334-6098crewchik21@irow.comNBut, I don't have hair in the portion where the disease has originated itself.Migraines and regular headaches. They come and go like all other headaches. Sometimes I take Tylenol or migraine headache drugs. No doctor has diagnosed them.XOn the left side mostly, near the eye socket. Sometimes down the left side of the cheek.uJaw was too small; buck-teeth, had to have braces for about eight years. Sometimes jaw gets locked into open positionCLeft side of upper lip is raised, like an Elvis Presley impression.GBrow does not start until after line down left side of face. Near nose.FAfter surgery, lower lid pulled down which affects wearing of contactsLeft side of tongue is smaller.Left side nostril was smaller than right side. Sometimes had trouble breathing. Jaw on left side was too small for all of my teeth, therefore a lot of teeth, including all my wisdom teeth, had to be pulledBI still don't have enough room in my mouth for my remaining teeth.Have had two reconstructive surgeries. One at sixteen which led me to the second before my spring semester of my freshman year of college. I was diagnosed and treated by Dr. Linton A. Whitaker of the Children's Hospital of Philadelphia. Not only did he tr1905 NICKLETOWN RD GREENWOODArkansas72936 MTTEE@AOL.COM}AN INDENTATION LIKE A WRINKLE DEVELOPED DOWN THE CENTER OF MY FOREHEAD THEN THE RIGHT SIDE OF MY FOREHEAD BECAME MUCH THINNER$NOT DIFFERENT COLOR BUT MUCH THINNER:PAIN MAINLY BEHIND MY EYE AND FOREHEAD ON THE ATROPHY SIDEJMAYBE- ONE OF THE MOLARS ON THE RIGHT SIDE SEEMS TO BE DYING FOR NO REASONTHINNER ON THE RIGHT SIDE#HAIR IS THINNER ON MY RIGHT EYEBROWMY NOSE IS SMALLER ON THE RIGHT SIDE AND THE CARTILAGE IS DISAPPEARING. ALSO MY CHIN HAS A LINE DOWN THE CENTER AND IS SMALLER ON THE RIGHT SIDEgNOT INITIALLY BUT MANY YEARS LATER IT SEEMS TO BE PROGRESSING AGAIN. THIS OCCURRED AFTER I HAD SURGERY.Weakness during headaches?4907 southcrest draustin78746 512 3273127jasonsubt@yahoo.comNothing that seems relevent. However here are some of the things I have dealt with. I am clumsy. I have had 4 broken arms as a child all due to being active and just getting into trouble. (jumped off a stool, fell off monkey bars, etc.) I have reflux of < the left kidney, much better now if not gone. As a child I had kidney and bladder infections quite regularly. I had a hard time with bladder control. My left kidney is slightly undersized. When I was in about 3rd grade, my doctor got my medications straightened out and all has been fine since. I was and maybe still am slightly ADHD. I was on ritalin all through gradeschool until 7th grade when I stopped taking it.16ish??JUnsure Several things happened at this time that might have affected it. First, I started a dietary supplement on the side that might have had something to do with it. All I can remember to tell you is that it is called OPC. I can look up more info if you want. Also, I started wearing a magnet necklace. I never stopped wearing it and the atrophy did then continue so I am doubtful if the magnets alone had anything to do with it. Also, the doctor had started me on plaquenil. I was only on it for a few months because I got a rash that might have been a reaction, we don't know for su8off and on throughout the whole process not just one agemMy PRS actually stopped and my face rebuilt. I described the events surrounding it previously for question 4.My hands get so cold I can't work in the winter right after coming in from the cold (they are so stiff) and it has always been a joke among my friends that in the winter I touch their face and make them jump from the icy fingertips! unless it is midsummer, my feet are icy cold, which is something my husband and I laugh about. I lose feeling in my feet and hands due to the cold. Gloves are essential except in hot weather.JuneHEastern European Jewish, with some middle Eastern jewish thrown in (1/4) Architect$My ear surgery as I mentioned above.Hyperpigmentation around left eye and on left side of neck Vitilgo in front of left ear and on left side of back -small patch half way down. Bone involvement upper and lower left jaw and left side of skull. Considered mild.1skin biopsy of vitiligo from left side of my back*1st cousin ( only 1 out of 26 1st cousins)%Concussion following a sports injury."Bad attack of measles when I was 4After year of lack of knowledge I think all neurologists should provide information to their patients when diagnosed, even if it's just to tell them the web address of Romberg's connection. Please feel free to contact me if you require any clarification oWhy did she have EEGAishling Cronin Ballycreen GlounthauneCo.Cork#01` 4354351 / 0868490374 Code 00353Hair thinning on affected sideAHeadaches have not been diagnosed as migraine - occur irregularlySTeeth on affected side are smaller, slow growing. X-ray of gums, show smaller roots1Lip on left hand side is smaller - curves upwardsSFrom midline of tongue to the outside has significant atrophy on the left hand sideSkin on lower left area of chin is coloured bluie, sunken area of muscle on left cheek area very noticeable (when upset - Aishling queries ' why do I have a hole in my face')Father, Uncles - Psoriasisk?Chicken pox or a viral infection which was associated with pains (shooting pains) in face area (left side) Myounghee Kim1-3-7,Nakagawanishi, Ikuno-ku,OsakaJapan544-003281-6-6741-1809mkim@oct.zaq.ne.jpArmI have been suffered from vitiligo since I was a child and I find some white spots on my tighs, arms, body at the same place where the fat was reduced by Romberg.hI have removed Amargam fillings from my tooth suspecting the posibility of causing problems on my brain.I had been suffered from epilepsy just after I stared working as flight attendant (international flight) and it became serious when I changed to fly longer flight and had problem of jet lag all the time.Thanks - asked about MRIDonamdong hanjinAPT 201-1505seoulKorea13606082-2-6221-2053hyunjin@ksri.org,Doctors whom I met didn't say about headache No symptoms14 Merchant Ave, Te Atatu SouthAuckland New Zealand 9 834-6040julie.bassett@nzl.xerox.comAThe fat tissue started to disappear from my cheek and temple areaTIt may have. I have a small one (instead of 4) prong molar at the back on the right.CVitamin B injections for 6 weeks, Homeopathic powder (No idea what)I did get bitten by a spider on that side of my face before any sign of the disease. I'd doubt very much that it would have anything to do with it but I thought I'd menion it anyway.I did get bitten by a spider on that side of my face before any sign of the disease. I'd doubt very much that it would have anything to do with it but I thought I'd menion it anyway. My atrophy is my only symptom and this appeared to stop soon after I was7/24 Middle Road,Havelock North Hawkes Bay0064 068777709 Not availableIRight sided facial pain caused by progressive atrophy and lots of surgery+Right side of mouth is pulled up by atrophyWRight eye severely sunken. Have had surgery to bring eye slightly forward. Wear glassesMy right nostril has been pushed slightly upwards and causes a lot of discomfort. I have had surgery to try to fix it but all unsuccessful. Sometimes when I yawn my right jaw locks, very painfulk. I wonder if this is because of Romberg Syndrome$right jaw slightly smaller, grindingright side thinner?I believe the doctor said that it was smaller on the right side klonopin,0brother had it when much younger, around 6yrs???\yes, when I was younger in England, I was hit in my head by a car as I ran across the streetMiamiFloridasfniles@bellsouth.netJune, 1997, I had Strabismis surgery that caused dilation of the pupil (7 m.m.) and turned a green eye color from lack of oxygen. I have a history of premenstrual headaches every month characterized by left orbital pain that last for several days. I have a constant background of nausea. On September 30, 1996, age 49, I developed severe holocranial bifrontal pressure-like headachesNo, I have occipital neuralgia.In 1984, I developed Temporomandibular Joint problems. and an arthogram revealed a meniscus tear. In 1997, an MRI revealed a missing left masseter muscle.At the age of 3, a white spot developed on the left eyebrow and eventually 1/2 of the brow disappeared on the "en coup de sabre" path on the left.At the age of 23, I lost the sight in the left eye within 4 days. It is a neuro-neuritis. Left vision is to count fingers in the temporal periphery only. A mass exists behind the eye with exotropia, exophthalmus decreased eye mobility.I can not adduct or elevate or depress the left eye. The pupil is larger, more sluggish and there is left afferent pupillary defect neuropathy. There is some evidence of aberrant regeneration.Skull defect over the vertex and parietal region on the left side of the head from the eye and is considered "en coupe de sabre."*Spinal tap to rule out multiple sclerosis._Steroid injections (set of 3) into left eye in hopes of restoring left eye vision in 1971-1972.Maybe, the history of my father's migraines and his death after a cerebral hemorrhage in 1964, at the age of 45. My MRI reveal no problems for me.A car accident in 1987. I lost vision in my right eye after hitting my head on the window. Vision returned after about 3 minutes.CThe doctors can only guess that maybe a bout of pneumonia at age 2.I just hope that more attention can be given to this rare disease. I feel I have suffered psychologically in the past for feeling like a freak, even with a mild case compared to others that I've seen pictures of on the internet. Thank you for beginning thNone at this time.2142 FleetwoodGrosse Pointe WoodsMichigan48236 313-882-5861vanraem@aol.com?I dye my hair now, but it seemed the atrophy side was more grayUThe tooth on the left side that is right in the path of the atrophy never fully grew.4Not normally shaped and there is definite hair loss.Very low pressure in the left eye (between 3 and 5....should normally be in the teens.) Poor vision in the left eye....legally blind in that eye, but I do have some vision.`Left pupil does not react to light/dark normally. My eye doctor would have all the medical info.< Cranial atrophy on left side. Hair loss on left side that I can conceal. I've been told that the atrophy is much more obvious in a picture or in a mirror, as in a reflection, than it is to look at directly.I do not understand why but know that it must be true, because now that my daughter is showing symptoms, I can see it much more clearly when I stand behind her in a mirror.cThe CT scan was done over 20 years ago (when it was a very new test). I've had no other tests done.vMy 10 year old daughter is displaying symtoms of hemifacial atrophy and the assymetry has been confirmed by our doctor1). Age 6 (approx), I was hit in the forehead with a flying baseball bat. The swelling was huge 2). Age 7, I hit my head on a metal water tank and again on the cement base of the tank with great force. I had to get stitches and still have a bump.My initial problems were vision problems. Any doctor that I would see would comment on the uneveness of my pupils. The eye doctor thought I had a lazy eye. The atrophy itself was not noticible until I got into my 20's. I was so fortunate to just happen to 6 Mead ave Mount SinaiCramping/muscle spasm in cheek/jaw area on right hand side of face. When I ate, ie chewed on something, it was as if my jaw would lock and I could not open my mouth without forcing it open/my teeth apartkIt was unlike anything I had ever experienced before. Visual defect started - slowly - a few month's later.Right at the location of the atrophy, I had, in my time, excruatiatingly sore spasms. These were so bad I would sometimes think that I might pass out from the pain. They would come in clusters, sometimes hitting immediately one after the other.The worst year was 1987 (I was 20). The muscle(s) in the jaw would seem to cramp, voluntarily, into a hard ball and I would try to massage it but nothing seemed to help. As I say, the pain was unbearable.It seems as if my PRS has now burned out ie. visually it has stabilised and the cramping is basically over. However, sometimes (and it seems that this occurs when I am tired, cold or, strangely enough, on certain medication/antibiotics),I get a bit of minor cramping/twitching in my jaw. Sometimes I notice a tiny bit of saliva shooting out my mouth from the rhs (as if a saliva gland is blocked or something).I have been told that this is because the disease started taking effect when I was 17/18 years of age ie. bone formation was complete.Two lots of reconstructive surgery/treatments: 1. Liposuction and re-injection of harvested fat into the area. This was under GA and the fat re-absorbed totally within about 3 or 4 months ie. was totally unsuccessful. 2. Recently ie. within last few month?? - FirstlyI was in France, had just finished school, and it was freezing cold. On my first night there I noticed the first jaw spasm/cramp.+ Fall when I was a little girl, cut and stitches on right chinPlease let me know if there is ANYTHING else you would like to know.... nothing concerns me, I just want to know more about PRS incl, mainly, WHAT causes it!! Good luck!! PO Box 3246 WestbrookNatal4400Zsevere constant non throbbing pain concentrated in the forehead and lower back of the headI'm not sure if it's related or not...my jaw now sits crooked to one side, I grind my teeth and the wear on them is now uneven.sunken area under left eye, loss of padding over that cheek, dimple/dent on left side of nose, change in contour of actual cheekbone, nostril shape difference on left side,Bother types of facial asymmetry, but that the people are born withObeen knocked in the head (and to unconsciousness several times) since childhoodOthe development of my first symptoms seemed so coincide with first menstruation,Relatives with facial assymmetry -whats this920 White Oaks Road Mooresville28115 704-799-6712Tracing30@aol.comBaldnessnausea, vomiting, arm pain left side loss of hairnearsightedness;Baldness, sensitivity to light and sound, easy fatigability>family with history of seizures but no one on daily medication?maternal grandmother has had three strokes, first one at age 40TONSIL SURGERYNLorin has frequent nose bleeds with and without being preceeded by a headache.29327 Cordell CourtRandolph Minnesota55065 507-645-7795mary.toledo@smead.comMy upper jaw was pulled up on the right side. My teeth were pulled to the right. All teeth on bottom right are loose, because not enough bone for the smaller root to set inWI had surgery to correct my upper jaw and straighten my teeth, with the help of braces..Lips are thinner on the right. Also pulled up.OBecause my eye socket is smaller on the right, my right eyebrow is pulled down.The area involved with my "disease" becomes sensitive at times. My scalp will itch severly and develop small "bumps" througout the effected area. I have a large irregular dark discoloration on the lower left side of my face and neck. The left side of my face and scalp is the effected area. My disease seems to be isolated to the scalp and face (so far). It starts in the center of my scalp and runs in a sort of triangular pattern to the left front of my forehead, down through my eyebrow and eyelid area and seems to be progressing slowly across the bridge of my nose. The most obvious scarring is on my forehead. I have to "pencil in" an eyebrow on the left side. I've been esperiencing coughing in the mornings. Not sure if this is related but it is very annoying. Can't seem to clear my throat. Feet and hands are "always" cold but never change color. JUST REMEMBERED THE DRUG I WAS ON WAS DILANTIN! It didn't seem to work for me.I wasn't diagnosed until my mid 30s. It seems to slow down at times but I don't know why. Maybe menopause has something to do with it. I'm 54 yrs old this April 17.2It "comes and goes". I haven't tracked any pattern^PS, I have NEVER been pregnant. Perhaps that's a good thing as far as progress of the disease.It was recommeded by Dr. Jablonski (spelling) from Warsaw Poland (about 20 years ago)that I leave it alone. She also suggested that I not wear pierced earrings and to let the pierced holes in my earlobes heal (did not do that).I anticipating having an eyebrow tatooed on the left side. I'd appreciate any input you can supply. My concern is that over the course of my disease this area has continued to "receed". If I had done this earlier I would now have an eyebrow that looked like a lightning bolt! Bo AnderssonNorthern EuropeComputer engineerWMoved a muscle from my foot to left side of lower lip in order to close mouth properly. Evelyn FillaOffice assistant/Homemaker%Many teeth problems on the left side.Child 6-8 yearsMY FEET GET REALLY COLD preston nelmsWHITEPLUMBER.SOMETIMES I HEAR A CLICKING NOISE AND IT HURTS%HERNIA OPERATIONS AND AN APPENDECTOMY AROUND SIXLI was diagnosed with mild depression associated with some personal problems. Carl DragoProsthodontist%class II malocclusion, no dysfunction21 yearsThe facial asymmetry was more evident on photographs than in person. Many people professed not to have noticed the asymmetry in real life and were surprised to see the differences in photographs AnonymousAnselma Jurez NoriegaSlavicmichael thomasgeneral contractor20's30'snMy hands (and feet) are almost always cold. The palms of my hands and fingers look splotchy when they're cold.Jennifer Alcorn very mixedfull-time motherLichen sclerosus; persistent phlegm in throat; eye pain w/yellow spot (not yet seen); anxiety; depression; crooked teeth; migraines.nIf my headaches & eye problem are related then it has not stopped; otherwise I'd say it stopped around age 17.Possibly - sun exposure.GInsurance ought to cover it - how do people get their insurance to pay? Lynda RenoufNew Zealand european, NZ MaoriChefIt clicks a lot.%Bronchitis, not chronic, but regular.*It seemed to slow down when I was very fit22 or 23tI went through a stage of serious drinking and smoking marijuana in my teens, it seemed to speed it up a little bit.Jared R. Fieldscacasin< sales Adam Smith*Norweigian 1/8 (the rest a mix of EuropeanNetwork EngineerI tend to blame it on sinuses, but, sometimes I can't open my mouth all of the way or close it tight and my jaw bone pops on occasion.`don't know if this is real or not, but the only thing that happened that year was I got married.Christine- Raynauds Syndrome, Depression Seths maternal great grandfather- Alkylosing Spondilitis of the spine Seths Brother, Joshua 19yrs- Facial deformity mostly of the lower jaw, it's twisting. Seths 1/2 sister, Tabitha 22yrs- a large nerve area (skin was darker, some type of birth mark maybe?), it was surgically removed and apparantly extremely painful afterwards. Seth's dad- heavy cig smoker. He's fine. His brothers & sisters with problems but his family is not close, (doesn't speak to each other) so we don't know much.Seth David WhiteS10 yr old, Mom is a nurse, and insurance adjuster, Dad works in Safety and TrainingTeeth don't line up.maybe-I was caught in a snow blizzard because I missed my ride and my parents told me that they thought that was what caused my face to be that way. I don't think they or any doctor knew if they took me at allJami PO Box 4037 Morganton28655 828-584-9956 my_prescious_izzybelle@yahoo.comjMy teeth/gums are in fair condition since I have had this disease. But I am in the process of fixing that.RMy right side of my lip is smaller than my left. My smile looks crooked sometimes.,But I have had glasses since I was 10yrs old7My right side of my tongue is smaller than my left sideI have diabetes, Polycystic ovarian syndrome and scleroderma or parry rombergs. Very confusing...I have also had hypertension since the age of 5-6 yrs old.EI had a biopsy of my right arm.....it showed scleroderma at age 6yrs.Nothing...but physical therapy. 136 Levo RoadTroutman28166 704-799-8251rosebudgoodman@netscape.net8A dark circle on my neck that simply would not wash off.@a blonde streak on the back right side - but not very noticeableIt's never been great enough for me to discuss with the doctors. But it is a tightening of the muscles in the afflicted area which is my right chin/cheek.yI am told by my plastic surgeon that my case is the mildest that he has seen (he has several patients with this disease.)You can clearly see a dip in my jaw bone in xrays. My lower jaw is smaller than my top jaw so I have had teeth pulled from the top and have worn braces for the past two years>I have thin lips but it is even thinner in the afflicted area.The discoloration that began on my neck covers most of the right side of my neck and continues up to the underside of my right ear. I can only wear special makeup (for birthmarks) as regular makeup will not adhere to the skin. I have had 3 fat grafts (remUI grew up in CT and NY but met a girl here in NC about my same age with this desease.Melissa Walbert Bowling GreenKentucky2walberthouse@earthlink.net: melissa_walbert@hotma,bluish bruise like areas on my nose at age 3Fbasically classic migraine: very sensitive to sound and light, intenseextreme fatigue0teeth don'y touch in places on the affected sidetop left lip disappearedMy Dad said that when I was 2 1/2 I was hit on the nose and cut by a rusty peice of metal while playing, a few months later the discoloration began. West BaldwinMaine04091stella@psouth.net'Bald spot on right side of head, on top,The teeth on the right are much more crookedBeth's chin was the first obvious sign. People often ask her "why she has two chins." Also the side of her face, beside her eye (right side) is very much indented.fHer nose has an obvious line down the middle and the right nostril is very much smaller than the left.XWhen she was two she fell and split her forehead open, requiring stitches above her eye.`She was diagnosed with a small patch of scleroderma beside her right eye somewhere around age 3.48 Pleasant Street Manchester Massachusetts01944 978 526 4754 annasmom18My skin change change was a bruise that never went away.Petit mal, and I have only had two seizures two months apart. Both seizures occurred in my sleep. They are controlled by anti-convulsives.,Tegretol 200mg 3x Lamictal 25mg 2 tablets 2xThe vision in my right eye is much poorer than left. There is optic nerve damage, eye doctor says that damage is not ongoing. He has monitored it for 17 years.>I had liquid silicone injections in my cheek and chin in 1974.928 Larchwood AvenueHacienda Heights 91745-1527 (626)536-7102xiomy200091745@yahoo.com6The tissue on the left side of my lip began to atrophytThe pain occurs on the left side. The doctors did not say anything, they just said that it was part of the syndrome.0The left side of the lip is raised and recessed.>The eyebrow does not match with the bone structure of the eye.My left eye has dry eye syndrome and my peripheral and I have very little peripheral vision. I am almost blind from my left eye,coupe de sabre on the left side of my skull.:I had a garage door fall on my head when I was 8 years old I don't know5835 SW 89 AVE33173 305-275-8422epslimjim@aol.compDeformity of the left side of my face. My fat of my left side of my lip and chin is pretty much completely gone.hLeft side of my face where the fat is absorbed, it sometimes has either a tingling feeling or a pounding1Left side of my lips is absorbed and discoloured.1118 Bardell Dr. WilmingtonDelaware19808(302) 994-7616mec1118@aol.commLower lip, left side, was flattened, but was rebuilt during my teens using tissue from inside my right cheek.ILeft side has a narrow line/notch running down it which has no taste budsIn addition to an en coup de sabre line (which was surgically cut away at age 6, leaving a scar in its place) the bony portion of the left side of my forehead is smaller in places than the rightLeft side of my nose is smaller than the right. Left side lower jawbone as well as the tissue covering it is affected, as is the left side chin and neck.WSurgery in the 1970s and also injections of liquid silicone (which were not effective.)My mother, 70, has had Raynaud's symptoms for two decades and it has very recently been suggested she may have scleroderma, though this has not been definitively diagnosed.My mother also has Meniere's disease, an autoimmune condition of the inner ear, and my sister's son has Type 1 (juvenile) Diabetes, also linked to autoimmunity.2109 Maiden LaneRoanoke24015 540-344-3878martyh29@home.com BEE STINGWhen I was about 11 or 12, I started noticing that my right forehead appeared different and that a vein running vertically in the center of my forehead was more apparent. At about the same time, I was stung by a bee at my hairline and this was thought to 3941 Shaker Run Circle Fairfield94533 707-428-1068delmercado@worldnet.att.netVery insidious facial hemiatrophy on the left side of my face. I now have thinning skin on the affected side of my face, with loss of eyebrow and receding hairline (slight) on the affected side.loss of hair on left sideThis has just started to occur in the past 6-8 months. I have not been diagnosed by a doctor, however my mother has trigeminal neuralgia (she is 75 now) which started in her mid to late 50'sShe has been placed on anti-epileptic drugs to try and control the pain. She DOES NOT have Parry Romberg's. No one in my family of family tree has PRS.]My left eybrow is smaller and has less hairs. I have almost NO lower eyelash on the left eye.My left eye has always had poorer vision (20/200) compared to my right (20/80) until I had RK surgery to correct my myopia and astigmatism performed on both eyes in 1992.lI now have 20/15 vision in both eyes. I have noticed that I have re-developed an astigmatism in my left eye.eThe left side of my palate has a considerable amount of wasting of soft tissue compared to the right.I also have developed a "cleft" in my chin (just inthe past 2 years) which I believe is related to the en-coup de sabre. No one in my family has a cleft < chin.A neurologist tested my left/right arm, leg, hand strength. Also did a test where needles were inserted into the facial muscles (bilaterally) and electricity was conducted through them to test the facial muscles for weaknesses.!I was put on 200mg BID Plaquenil.,My mom has trigeminal neuralgia (Right side)98 Forest DriveBoiseIdaho83716 208-336-6878juliebacke@earthlink.net.discoloration under my right eye - "black eye"/white hair developed faster on the right templeA sharp stabbing pain on the left side, right above jaw line - occurs very infrequently but in July of this year, occurred daily for a week or more.lwhen younger, my lips on the right side had uneven bumps - also, discoloration above the lips on right side.lower on forehead than leftDiscoloration below right eye and neck under jaw line and also above right lip. Tissue melted away from right temple extending down right side of face.Have looked into reconstructuve surgery but did proceed with the surgery because of fear of the invasive procedures and more recently, health insurance denied coverage for the surgery - did not appeal decision because of my own uncertainty of the extensiv'Mother had kidney and thyroid problems.I am still discovery ailments that might be associated with the hemifacial atrophy. Recently, pains on the left side of my face and frequent sinus infections may have connection to the hemifacial on the right. Consequently, sought alternative treatment ofAs stated earlier, I am still learning more about this disease and how it has affected my body. Am still making associations with symtoms that I previously thought would unrelated - particularly with the left side of my face - the past year, I have had seMoises Jimenez2119 madison ct. Chowchilla93610(559) 665-7213tj_soldya@hotmail.comWhen i was born i was a normal baby but when i was about 3 yrs. old my right side of my face started to look different.I am missing some tissue around the cheek area, and i have a dent on my forehead. 'coup de sabre' Hannah Bodnar p.o. box 63 Millsboro15348 724-377-1179kerr4@adelphia.net1Losing patches of hair on the scalp near forehead%Steroid IV 3 times/month Methotrexate 967 Coolidge River Rouge 48218-1608 313-843-9656SgtBooks@att.netmy chin was growing crookedNhere really isnt a "way to have a migraine" but basically, the pain, builds astime goes... starts in behinds the right ear, around the back and goes up and to the front, over to the other side. It generally is on the right side, completely before it goes to the left.Uver the time from 1985 till, present I have had all but 9 lower (front) teeth pulled.-I have close to no top lip on the right side.RI do weat glasses, have since 1987, but Im not sure that it has anything to do it.uBonescan (not sure of the technical name of it) have had really intense xray, that took like an hour to xray my head.had a REALLY bad infection from a blow to the head when I was young. From what I was told by my Aunt, My brother it me with a little metal gun, and got infected. P.O. Box 1804CantonGeorgia30114watisacherokee@aol.comBatrophy of the lower right side of my face, staring around age 18.I don't have bad headaches as stated above, but I do have pain along the right side of my face, mainly in the eye, nose and upper mouth area.OI say yes, because I've had tooth pain, with no identifable objective findings.2Indentation on the upper lip on the affected side.I was born with a lazy eye, the funny thing is the lazy eye is on the affected side of my face. This right eye has always been somewhat smaller than the left eye. In addition, the right eye has sunken somewhat into my skull (more so that the left eye).around the lower jaw line on the affected side, the skin turned almost a bruised-like blue color, because of the fat that was wasting away under the skin.low level of self-esteem---feeling that I don't have a pretty face, and that men know it, and show it in their actions toward me. It has affected my social life.None of the above. What's funny it did not even cross my mind at the time I was dx'd.....now, looking back, it makes me mad that the doctor did not even address the possible need for tests.'Have had, I think, around 17 surgeries.skull fx at age 19I first noticed it when I was in the hospital from a car accident, this is when I noticed the atrophy around my nose. Along with the skull fx mentioned above, I had received a blow the the face.5425 dupont st. chattanooga Tennessee374121-423-867-4691slysp1@aol.comsom eloss of hair,an inch long indentation in middle of tonguesome loss of hair near foreheadwhen i was 6 or 7 i hit my head hard which caused bleeding, i noticed a year or 2 later a indention where i had had accident "en coupe de sabre" sabre1521 NW 94 Ave plantation33322gococo39@hotmail.com1bald spots on head with accompanying sunken areasThis entire disease (au coup de sabre, and I guess I don't have the full syndrome you are describing here is located in spots on my head and is creeping out towards my foreheadlocal biopsy I visited dermatologists for years before I was diagnosed and I still can't seem to get any information even through the web page.gLow dose antibotics for a several month course through a specialist in Miami. (Could it have been you?)Rfirst cousin (female) with hair loss, will have to contact her regarding conditionNepisode of severe leg pain and other problems a year or two prior to discoveryI would like information on how local scleroderma and this syndrome are related and where to look for information regarding my condition.9662 E. Briana LaneTucson85748 520-722-3637Kat7221002@aol.comKThe first symptoms were bone and tissue degeneration when I was very young.+I used to have blue eyes now they are greenI have a white streak on the front right side, it may just be going grey even though I am the youngest of three children and am the only one with white streakVery severe, thankfully I do not get them very often, but when they do occur they can last for days. I had one not too long ago that lasted for a little over a week. They are very painful.I CHECKED INFLAMMATORY BOWEL DISEASE FOR WHICH YOU ONLY LIST CROHN'S DISEASE AND ULCERATIVE COLITIS. HOWEVER, THERE IS ANOTHER RELATIVELY RARE INFLAMMATORY BOWEL DISEASE, WHICH IS ONLY SEEN ON BIOPSY AND IT IS CALLED COLLAGENOUS COLITIS. THIS IS THE IBD THAT I HAVE. THE LAST COLONOSCOPY TOOK 11 BIOPSIES FROM THE END OF THE SMALL BOWEL THROUGH THE LEFT SIDE OF THE COLON AND ALL WERE POSITVE FOR COLLAGENOUS COLITIS.michael klihanceafrician american17 yearsmetin,turkish but mixed (mothers mother was a jew)2but when I chew sometimes makes krick krack soundsdeudenum ulcer I dont knowI dont know but it seems it is progressing ONE THING I FORGOT one ear is 6.7cm the other 6.3 penis is also deformed slightly towards leftside so when urinating it makes 15degree angleI remember when I was a child I chewed and bited bateries(still remember the bitter taste)yukk.I wonder how I survived after that.My hands are very sensitive to cold weather, and are painful if I go outside in the winter months without very thick gloves. Without a good set of gloves they turn bluish and hurt as the warmth returns indoors. Gill ChapmanWhite caucasian Law lecturerMainly symptoms of depression and anxiety. I am described as 'highly strung'. Physically, no major problems now, although as a baby I contracted a severe form of bacterial meningitis and suffered from typhoid fever in the Middle East, some years ago. Apart from that, great!! Maria Garner Jada Callaway Computer workI grind my teeth badly at night and find myself clenching my teeth/jaw during the day. I wear a night guard so it absorbs some of the grinding. Jaws hurt and at times it is painful to fully open my mouth.Dermabrasion to remove the discoloration left from the disease. I really had the surgery too early as the disease had truly not run its course. After the surgery I still ex< perienced a slight degree of discoloration and some loss of fatty tissue to the area which they operated on. The outcome was still better than the way I looked prior to the operation. It was just a year or two too early.9Hands are cold most of the time, even when it's warm out.Adriana CampbellCustomer Service%Constant back, shoulder, & neck pain.9Substantial facial damage on left side in a car accident.Just stopped with age5The left side of my tounge is smaller than the right.Jaw pain!! A number of Parry Romberg's sufferers have TMJ or some sort of jaw problem. Which causes numerous amount of headaches. And because of that sometimes the ear can get bothered and it will be hard to hear.? I would like to know if others are having thyroid problems or esophageal problems. I would also want to know if the others have depression and/or anxiety(panic) attacks.vI do want to thank you for doing this for us. For once we have someone who cares about us. Many thanks go out to you!!#Do other people have panic attacks?Globus -- go and see doctor.5 Dorado DriveNew York10577 914-761-3278dorad5@aol.comClassic Migraine with aura?There are missing eyebrow and eye lashes where there is atrophyI have had three surgeries for double vision, all of which have been successful. I also had a spontaneous filtering bleb in my left eye which required a sclera graft because the eye pressure had dropped to about 5.The graft was successful and the eye pressure is about 10. I wear a bandage lens for pain which does offer full relief from pain. I now have minocular double vision from my left eye only. Positive ANAIn the early 1960's I was part of an Food & Drug Administration study on silicone and I had silicone injections in my face to correct the contours. I still have the silicone and it has not caused me any problems although it has hardened.qThere was some question that I had a head injury in kindergarten @ school but it was not clear how severe it was.Not sure. Maybe a head injury.NI test positive to lyme although I was never specifically diagnosed with lyme.LAnything you can do that would lead to research of this would be monumental.Dr. Stone, Thank you again for responding. Yes, it would be a good follow-up point. In fact, I do have a positive ANA. Much appreciate your interest in this rare and curious disorder. With kind regards, jo-ann from New YorkI have no ethical concerns about the study and willingly participated in the hopes that it will at the minimum raise awareness.. Thank you for acknowledging receipt of my survey. I was most pleased to > participate. There was something that crossed myGeneral ThankyouKansaspami48@hotmail.comQbluish coloration on jaw line and muscle spams in the jaw area on the right side.)have small bald spots on rt. side of headI have not seen a doctor for this, sometimes my teeth on the right side are very sensitive to cold and when the weather gets cold, I have muscle jaw spasms on the rt. side, not as much as when I was a teen and in my early 20's.They are better now since the fat injections, but I do have strange sensations on the right side of face. Sometimes a tick on the eyelid, upper and lower, rt. side."more sensitive to cold on rt. SidesRt. side on upper lip pulls up slightly and had lost fat tissue in the upper right lip, but have had that replaced.Lost eyebrow hair, has not grown back in and pulls up slightly on rt. side. Have lost most of all lower eyelashes, have not grown back.Rt. eye is not as clear as right because of the loss of fat tissue behind the eye and it has recessed quite a bit, I still can see with the eye though, and I have some double vision because it have recessed so much.I do have headaches, but not migrain, have lost the fat tissue in rt. foot on 3 middle toes, which are to the bone, have foot cramps often, the fat pad behind those 3 middle toes has also diminished. Sometimes get a severe pain in rt. ear during sleep.skin changes in the form of lost tissue. Denise had braces at the age of 11 or 12 or 13 and at that time I noticed her smile was different.I thought it was the braces. It turned out she had lost some fatty tissue in her cheek area adjacent to her nose. A tad of discoloration soon followed.left - only occasionallyupper lip skin is thinLnear-sighted - due to family history of this or Parry Romberg? We don't know2Headaches - not really migraines. Pretty regularlygBlood tests. The Mayo Clinic in Minnesota had theories of connection with thyroid issues in the family.Surgery just on Oct 25 2001CBut we have relatives with graves disease and on thyroid medicationthyroid - see above>Not sure if it is relevant - at age 10 months she fell oin he\257 Edgewood Lane West Bend53095(262)-335-2098mandbolin@hotmail.com7On the left side. The doctors never called it anything.I have braces on for the second time. My teeth keep shifting toward the affected side of my face. The doctors think that if I have my jaw fixed and have permant retainers my teeth will be straight.7My left side of my lips is smaller than the right side.0My left eyebrow doen't move as much as the rightVMy left gets watery a lot because of my tear duct and because I have no lower eye lid.JThe line on my tongue is not in the middle it's more off to the left side. 105 Evcar Way Rio Linda95673 9169926036ckdavis@excite.com.I started with dark spots on my neck and face.When I get migraines, they begin with a floating light that I see in peripheral view. Then my head starts aching so badly that it makes me sick to my stomach and won't go away until I sleep for several hours, which is difficult because the pain is so seveGI get sharp pains that shoot through the left side of my face and head.pAll of my teeth on the left side of my mouth have been effected. The roots and nerves are pretty much dissolving;My lips, both top and bottom, are thinner on the left side.8My sight is a little worse in my left eye than my right.nMy tongue looks strange. The line in the middle is moved to the left side because the left side has atrophied.{I get severe sharp pains in my left ear and down my neck every great while. They usually last 30 seconds to a minute or so.Just a month or so before I noticed the darkening on my face and neck, I had been hit extremely hard several times on the left side of my face. I always thought it was just coincidence. LymeI have had five surgeries since November of last year. My last was in August. I had a new type of implant put in my chin and cheek. The one in my cheek wouldn't take and the one in my chin was much too large and looked awkward. I would love to have a surgI am extremely glad that someone is willing to actually research this disease. I have talked to several doctors who know absolutely NOTHING about this syndrome and are not interested at all in finding anything out. Thank you for your support.12710 Golf Club DriveSavannah31419 (912)925-7098skeetersma@aol.comathropy on the right sidedouble vision, caused strabimusThe right side of my neck is very atrophied. My right eye was pulled upward. I have had muscle surgery on both it and the left eye. I am having some fat transfers done.|I have had one so far, it corrected the right temple and added volume to my cheek. I will have another surgery in the spring=I have had two strabimus surgeries and one fat transfer done.ZI did get hit in the head with a baseball bat when I was arount 11. Had a slight concusion4165 Cook Springs Road Pell City35125 205-338-0533Bfkeenum@aol.com(Face - one side, ear and eye deteriationLOne small of white hair long before the normal gray hair as a result of age.Years of reconstructive surgery have left nerve endings "out of place" and I have daily pain, sometimes mild and some days not so mild.:Seveal teeth were removed during various stages of surgeryfA PULSATEING,THROBBING PAIN OCCURING ON A DAILY BASIS DOCTORS I HAVE SEEN ARE UNABLE TO DESCRIBE THEM.NECK AND SHOULDERS TENSE UPTHE SIDE WITH THE ATROPHY< 9WHEN BABY THEETH WERE LOST, NO TRACE OF ADULT TEETH FOUND"CMANGOGNIA@AOL.COM incorrect emailGeneral Thank you2523 Rambling Rd.ViennaVirginia22181(703) 242-9327MandyPerro@aol.comYleft side of face appeared not to "grow" & develope in the same manner as the right side.throbbing, "stress" type, felt like a huge rubber band around head. Sensitive to light & noise. Ususally would have to sleep them off in a quiet place. When I first started to have them, they occurred everyday at almost the same time.Then they suddenly stopped. I didn't have them for a long time ( only occassionally). Then they started to occur more frequently. I now get them 3-4 times a month. The pain is centered in my left temple & I become really disoriented. I also can't focus myI don't know. I haven't heard this diagnosis applied to me. I do get a prickly, tickling sensation on the left side occassionally. I also feel number on the left side than the right. top left lip is slightly thinnerWMy left eyebrow is lower than the right. I have also noticed the hair pattern thinning.This is where the majority of my recent changes have occurred. My vision in the left eye has changed quite drastically each year. I also failed the drivers vision test this year because when I looked at the field with only my left eye, it appeared blank.With my right eye, or my right/left eye, I could see the letters in the field. I also get a sharp jabbing pain in my left eye. I have also lost control of my eye muscle in the left eye.When I look straight on, the left eye will frequently drift to the leftMy ENT thinks that the problems that I have with my left ear MAY be from the PRS. My eustachion tubes are poorly formed..rlcrobin@reliable-net.netDepression in right top side of skull after trauma to right forehead. Hair changed from blond to white then fell out. Half of eyelashes in right eye fell out.IPatch of hair over "coup de sabre" turned blond then white then fell out.%depression in center of right eyebrowComplains of itching in right eye. Always rubbing eye. Occassionaly complains of headache but not severe enough to suspect migraine. Comments on itching sensation at the "coup de sabre" mark.5 yrs old fell off oak stool, stool fell and hit forehead, momentarily lost consciousness and wet his pants. No other problems found.Injury to head by falling stoolI have completed this form on behalf of my grandson who was diagnosed 5 days ago. Hope to hear back very soon on any results from the survey. He does have bone involvment. Will send photo. Robin Clarklorain4405Greyideopathic grand mal siezuresI400mg 4x daily at present I am not taking any. Although I probably shouldno doctor has described themJjust very intense pain in front of head and also in back of low scalp area8thinning on right side with a slight droop to this area./hair loss, tissue loss, skin shiny and scarred.When I was first diagnosed with scleroderma the cleveland clinic put me on d penicillamine, but I was losing bone marrow after the first few days and had to stop taking it. I have been on nothing since.&only for the pain from the sclerodermaYes. when I first noticed pain and darkness in this area I had been hit on the forehead by a hard toy that my son had wielded at me while I was laying on the couch.my first diagnosis was trigemenial something I can't recall exactly what at this time. I sought help for pain- with early symptoms of discoloration , tissue loss and hair loss was pain in the fifth cranial nerve area. I was given a block to this area, whewhen I had the MRI the technician asked if I had a steel plate in my head, Or if I was ever kicked by a horse or had any other head trauma. He later showed me what he saw on the picture. I showed him the lesion and he was astounded. He had never heard of Yes. when I first noticed pain and darkness in this area I had been hit on the forehead by a hard toy that my son had wielded at me while I was laying on the couch. I never had any symptoms before this. Although I have been told that this is probably pure25315 old carriage lnspring77373 281-355-5240firehotsw23@yahoo.comSkin changes in face and on my back it lookes wite and brown it covers a big part of my back. left side of face is out of alinment with the right. skin is deteriated, no fat and hardly any mucle. Grang mother has this also.happened at time of accidentmy teeth are un even on side of my mouth is smaller than the other and my mollers don't touch together like they should. my bite is uneeven. even after 4 years of brasses.)tope and bottom left lips are very small.!one side is lower than the other.fI was diagnosed with TMJ as a child. it still clicks when I open my jaw, and always feels out of jointregarding the questions below, I don't know if it has stopped yet, I was just diagnosed, and it has bee n increasing over the course of the last few years45 Maybe stress?/I was wondering if physical therapy would help?Valerie ScannellHispanic / CaucasianYvonne Butterworth Nursery Nurseo'Dull ache occasionally left side of jaw/removal of morphoea in 1982 (under breast bone)Ms.Rubin Barb Bittner Marketing The plastic (synthetic cheek bone) is on top of the remaining bone structure on the left side of my face. I am also fairly pleased with the use of alederm in my last surgery. It may turn out like the fat injections and disolve but so far it is looking like a good tool.The free flap transfer of omentum was NOT a good solution/procedure. That first surgery messed me up more emotionally and physically than any of the other treatments I have had.CHRISTINA OCHOAHISPANICMEDICAL OFFICE MANGER.THE DARK SPOTS ON MY FACE BECAME MORE APPARENTmelissa gravesnurse Kathy Luczakbanker7not exactly lockjaw, but cannot open my mouth very wide/eye doctor - legally blind in left eye (20/900){speed didn't change, but left eye has sunken deeper into socket in last few years. I take Lortab 7.5mg for eye & head pain.&scolatic (?) implant - 1975 - rejectedCristina EchemendiaCubanThis was a main problem at the onset of the disease along with strong pain. I still can fully open my mouth, but I don't get the pains and the "lock jaw" as often as I use to get it when the disease was still developing.qThe only thing that just came to mind was that I do have a history of arthritis/rheuma on both side of my family.It seems like it went from being a white small spot to a hardening and discoloration of the skin fairly quick and then a slow degeneration of the fat tissues. My disease is pretty much stop by now.OI stopped looking into further surgery since the ones I had were unsuccesful. The last thing I heard that may have worked was a piece of muscle from the leg inserted into the area. It sounded very tedious and of course I couldn't afford the cost. I believe I have most of my medical recored from the time I was dealing with this issue.#I grew up in Chicago, Ill. Always had problems with fingers/hands/toes/feet. During winter months always wore leggings to bed because otherwise I had trouble walking upon waking up - knees wouldn't work well. Even have trouble with fingers and feet in Air Conditioning, fingernails turn blue Beth WilliamsWhite (Jewish)Accounts Payable#Not very often. Occasionally while eating jaw will "pop" and I have to stop eating at that time. And just recently if I am not paying attention, but am concentrating very hard on a task that keeps me still my jaw stiffens up and it takes a little more effort to get things "back into place".yLots of back problems. Started with a lifting injury. But the biggest problems seem to be in the SI joints. I can't understand how that came from the injury. Bulging discs yes, but the joint and muscle stiffness is almost worse. Still get dizzy spells now, more than the headaches. Doctors don't seem to see an urgent problem with that. It's more irritating than anything else.Maybe stress - the symptom of the progression was an uncontrollable twitching of my left eyelid. Very irritating, and seemed to be t< he onset of further drooping of the eyelid.:Right eyelid lift based on a diagnosis of Ptosis from trauma to the head during forceps delivery. When the surgery didn't work, the Opthalmic plastic surgeon attended a seminar where he heard of "En coup de sabre" and that's when he put everything together and produced my diagnosis of that or Hemi-Facial Atrophy.*The last recommendation that anyone gave was for a silicone sling somehow attached to the inside of the eyelid that would keep the eye open and I would have to pull to shut. Didn't sound like an attractive option and repeat surgeries every couple of years just didn't seem feasible (or affordable). Bree Pizanochiropractic technicianAfter clenching my teeth, chewing on something gummy, yawning, or for nor reason at all, my jaw clenches shut and it takes great effort to re-open and loosen it back up.Possibly; I was told the disease would maybe burn itself out after 4-5 years. Around the time frame the doctors had decided the disease had stopped, I had been taking prednisone and plaquenil for a lengthy period of time. I believe the doctors felt the prednisone help alot. I was on that for over a total of 2 years. I also stayed on plaquenil for my first few surgeries as a safety net in case the surgeries fired up the disease again.Ho mani e piedi sempre freddiLada LarovikovaLibera professionistasplease do not release my name or give an personal information without my permissions. Thanks for all your research.chrys@athenet.netacne medication - accutane6715 Crimson King Ct. Indianapolis46256 317 577 8210cmacmom@home.com~At age 8 a white line appeared down the middle of my forehead. We thought it was from being hit by a large stone a year beforeAn indentation on right on chin which causes the lip to drop slightly. Also a dent in jaw bone on right side. Forehead had indentation which also showed up as a slight valley in skull in CAT taken at age of 15. Forehead has continued depression from betweDoctors have decided to look at CAT taken 6 years ago. The only other measure being taken at this time is UVA therapy 3 times a week. The doctors seem to be leaving it up to us to find new research for treatment. They have diagnosed this as linear scerode3621 Lebanon Church Road Gillsville30543 770-535-0054I'm glad someone is researching this rare disease. My friends, family and co-workers can't believe I have some rare disease. My problems have been blamed on stress, but since I started researching scleroderma and Parry-Romberg, I think I've finally found 45 Hotham Ave BoddingtonWA6390 08 9883 8079dlclwaller@yahoo.com.au Lipoatrophy/Adult teeth are not straight. Some are sidewaysVery little hair, almost noneBlin in the right eye21 Rutledge Avenue Bartonville61607(309) 697-3012Purzns1@aol.comNa circular patch of missing hair and then deep groove started down my foreheadgdovonex cream for 2 years didn't help PUVA treatments for 4 months didn't help Plaquenil for 1 week now4Fatih Mahallesi Meltem Sok. B1 Blok D:9 KucukcekmeceIstanbulTurkey34650 0212 5807702ceylan_hakan@yahoo.comHair loss on right eyebrowsActually I don't know that what kind of tablets I am using. I am writing the prescription. . Flamtadin . Contra ctu bex . Gastrosidin This is the only treatment the doctors have suggested although they agreed on that these tablets and creams can't treat t fell on chin.First of all, I would like to thank you for your informative website and help. I want to explain my situation. I am from Turkey. I realized that I have an illness four years ago. First symptoms were hair loss on my head. Then a skin part on my right side Dr Forselius Backe 9 GothenburgSwedenS-413 26 +446031411488henthor@hotmail.com%'en coup de sabre' has been mentionedHave never heard that word, doctors haven't given me a name for it. It's not a unbearable sort of pain, it's an ongoing "sensation" like a low noise (if that makes any sense). It's exclusively concentrated to the left side of my forehead and skull.Have lost nearly all of left eyebrow. This have progressed gradually in my 20s. What remains is a few number of hairs (nearest to my left ear so to speak).Hard to say, I began wearing glasses at 22. My eyesight is worse on my left eye compared to the right. But I don't have major problems with sight.It's important that my name won't be used... aside from that you have my permission to use whatever I state in this survey. If there are any further questions you might have concerning my condition, please send me a mail.2436 ColeraineMontralQubecH3K 1S4 514-933-0962amelielozeau@hotmail.com=Loss of a little spot of hair, eyebrow (alopecia) and eyelash"Loss of the right eyebrows at 5 yoI had fixation of silicone on my forehead, molded to the appropriate shape, 6 years ago: a success for me I had realignment of both jaws (the surgeon fractured both jaws, realign them and immobilized them for 3 weeks) P.O Box 317 Misenheimer28109(704)-463-1360mpb@pfeiffer.edu,I've complained to my General Doctor about cold hands and feet to no avail. No color changes. I sleep in wool socks and sometimes even that doesn't help. Have spoken to a Rheumotologist (spelling) about this and he said "you have Sclerederma. Live with it. We have not treatment." So, I live with it! Linda BrinkAt times I have severe but painless cramps in the left (the affected) side of my face that cause my jaw to lock shut. These cramps are highly visible on the surface and almost humerous to watch. Haven't had this happen for about a year.438 harrier park, east hunsbury, northampton, NN4 0AG Northampton 01604 702305severe ache around the right eye and cheek - this is the side of the face that is affected by the scleroderma. Apart from forehead involvement the right side of my face is atrophied. I came across Parry Rombergs by accident and think it fits my symptoms. Right side - as described above.Bone loss on root of front teeth and some loss of gum tissue. Damage occurred during last pregnancy -dentist is unsure whether pregnancy of scleroderma is to blame.*biopsy of scar tissue to confirm diagnosis maternal auntmother is getting progressively more and more disabled with a neurological condition that doctors have been unable to diagnose. She has had it for at least ten years and it has the appearance of motor neurone and multiple sclerosis.Possibly first pregnancy. First noticed symptoms when baby was 6 months old. I have four children and there seems to be a pattern of remission and then flare ups during and after the births.I have seen a number of consultants as I have moved to different areas. I no longer see the consultant at my local hospital as he gives the impression of being totally disinterested in my case. This is a very lonely disease and it is sometimes painful to 1329 Cathy Wayameliaohio45102 513-943-1722fambryd@hotmail.com!vitiligo, pigmatation of the skin%hair on right side temple line silver#like a stabbing pain behind rt. eyeblack outs where i quite breathing , and had seizuer type activity ,this was between ages 3-5, then between ages 5-7 sever headachs behind right eye that became almost a weekly occorence , more sever each time. ,at age 7 right eye lid ,browl,lashes, and t?????right one is silvervision in rt is worseIn mid 20's had headach so sever required hospital er care and CT was done. developed hair loss in one spot on right side, joint swelling, abnormal LFT, Cronic fatigue,shortly after this episode<eeg as a child ,ct as a child and then as a adultct was done6as a teen ager 13 feel off hourse and got a concussionS?????was never tested but had to have a tick surgicaly removed?? aprox age 3-5yearsDuring teen age years I would have urges to throw myself to the floor and jerk around , In mid 20's had headach so sever required hospital er care and CT was done. developed hair loss in one spot on right side, joint swelling, abnormal LFT, Cronic fatiguestruggled in school, had to study very hard to just make < c, trouble with consentration, I would learn something then not know it the next day.nI have worked in the medical feild now for 13 years as a medical assistant , and have yet to get a correct DX:207 East School StreetThorp54771(715) 669-7629seibers@discover-net.netI started having episodes where my right arm would go numb (starting at my finger tips travelling up my arm) and then the right side of my face would go numb.VThese episodes lasted about 20 minutes. I was later diagnosed with Jacksonian EpilepsygAs mentioned previously, I would experience parathesias on the right arm and the right side of my face.JTegretol XR 400mg 2x/day (I recently discontinued this med after 10 years)!flashing in my eyes, bad headache AngiogramTegretol; propranolol; aspirinMRI and CT findings consistent with "lacunar type infarctions of the left thalamus, anterior limb of the left internal capsule, anterior portion of the left external capsule, and gray/white junction of the left frontoparietal region." I was immediately puMilfordpandadog@fuse.netHow about stress?!I know that I am an unusual case as I developed P-R's later in life than what I think is typical. It developed very slowly and it took about 4 years to be completed (if it is). I have only fat loss on the right side of my face, no muscle or bone loss, so 13125 Candiada Rd. prince George 1250-964-3810perfect_littl52@hotmail.comeI usually have them when I get stressed or am just felling really hot or cold or when i just blackout*on my right side usualy around my forehead"makes me hae a very wierd overbitethe right side is slanted up MethotrexateI go see the rombergs connection and most peple who have it have been injured in some way like with me I got attacked bytwo dogs just before I started seeing signs of it5000 audubon laneconcordnc280251-704-262-9527nikki1230@ctc.nethas about a 2 inch gash on right side of head above the hair line and also a bluish red mark on right side of forehead above the eye that comes down to about the nose.headaches come and gofeels nauseatedXnot sure,does have some tooth decay, just diagonosed with parry romberg today march 3rd.)will be having eyes checked on march 8th.derek will be seeing a specialist on may 16th who has more experience with parry romberg syndrome.His doctor setup the appointment with the dermatologist because he was concerned with the gash on his head. 19 CentaurusIrvine California.92612 (949)854-1537jamie.premierrealty@cox.net*The left side of my face began to atrophy..Lost pigmentation on left side near the crown.MI had to have a bridge made at top left side of mouth due to teeth loosening.GI have had my eyebrows tatooed because of loss of hair on left eyebrow..Left eye is weaker than right. I wear glasses. See above.1I have a brother with a hare lip and cleft palate auto accidentBecause of the severity of my problem, I had silicon injections to the left side of my face from approximately 1970 through 1972. Dr. Franklin Ashley of Los Angeles (since deceased) gave the injections to make my face more symetrical. Unfortunately, withiwww.newportcoasthomesite.com.av. san juan de dios, terrazas de valle arribacaracas dtto federal Venezuela1080a9750875guacuco@cantv.netleft lip atrophyeyebrows tail alopecia panoramic r/xI wish your help for my treatment I dont have resources for my treatment Let me know if you can help me If you can send me a bibliographic material about my condition I,ll appreciate send by e mail to guacuco@cantv.netFocal SeizuresMEDIANBodyHair Facial PainLipEyebrow%CTBiopsyAzoSurgery Relatives Rel Epilepsy Rel Medical Head IjuryLymeMEANMIN%RightMAX%LeftAlmost every dayNZEvery 1-3 days0-5 Every week6-10Any extrafacial Every Month scleroderma11-15Every 3 Months16-20Once or Twice a Year21-25 Upper+BothLess than Once a Year26-30They have stopped now31-3536-4041-450-1512Total'Isolated coup de sabre/ linear/morphoeaMixed36-41Excluded Evelyn Dayman31 Congewai StreetAberdare2325 02 49909149everex@optusnet.com.auHemiparkinsonism Hemi Atrophy49eI need to use daily Liquifilm Tears as I dont blink and my eyes get very dry if I dont use the drops.^I stumble over the words that I am trying to get out,it feels like I lose control of my tongue M y neiceI was diagnosed in December 1995 but the doctors that I have been seeing seem to think that It was mis-diagnosed back 1989 as Repitive Strain Injury. Back then the symptoms were pain in my right wrist/arm unable to carry briefcase in hand, pick up coffee My specialist Dr V Fung Neurology Department - Westmead Hospital - Sydney, New South Wales, Australia 2145 has told us that the general thinking is that it is possibility linked to a birth trauma- I was born with a heart condition - "Hole in the heart".I along with my husband have just finished taking part in a research programme with Dr Fung at the Westmead Hospital and have also been asked to take part in a world-wide Drug research programme which is to start in Feb/Mar 2002, the reason being to take Celia Pidouxchantal.pidoux@mairie-lyon.frClia est ne le 19 octobre 1978 l'Hpital Gnral de la Marine El Ferrol, en Espagne. Ds sa naissance il a t constat une plaie ronde, de la taille d'une pice de 20 centimes, sur le sommet de son crne, ainsi que plusieurs boules sur ses jam@Left side of my lips are slightly drawn downward as in a stroke.hI was told the Rombergs has destroyed parts of soft tissue and has left the eye fifty percent destroyed.University Hospital at Birmingham, Alabama did tests for @2 weeks and I have no idea what some of them were. Like testing nerve damage by inserting needles in my face.In early stages of treatment I was given numerous silicone injections while Doctors were looking for "solutions". Later, during a lenghty procedure the silicone was to be removed and the amount removed was much less than the recorded amount previously injAt the time I was diagnosed I was told the only medical records available at that time was all children. At that time I was the only adult they were aware of undergoing treatment. Prior to age 30 I had no problems related to Rombergs. I have three beautif3033 Webber Hill Road Trafalgar46181 812-597-0193No But I was checked for it.170 Laurel Leaf LaneCanyon79015 806 655-8555covin8@msn.comtAmber's eyelashes on her bottom left eyelid were no longer there and there was a dark appearance under the same eye.eAmber has developed a gap in between two of her front teeth that wasn't there when the teeth came in.{The upper left corner has become noticably smaller than the right side of the lip, thus causing the smile to appear crookedThose are the main sympoms. Amber's health has been and is still great. The asymmetrical appearance that is developing in her face is her partent's main concern.This may be totally unrelated, but the summer befor we notice the eyelash loss, I noticed the darkened appearance under both eyes. One eye cleareed and the othe one didn'tAmber has never had a test for lyme disease because she has never had any of the symptoms but I have wondered if that could be possible.My name is Shonna Covin and I am Amber's mother. We have become very frustrated with the lack of information that is available. It breaks my heart to see Amber's beautiful face to now only be halfway developing. I began a file on Amber consisting with a pRI would like to know who and how much research is going on regarding this syndromeMesaArizonakitt1224@aol.comLeft facial atrophy3Sometimes the left eye appears more green than blue^Have a patch of gray hair in the front of my head, starting to the left of center on the scalpHad bad headaches in late teens, but not migraines. Started having right-side migraines in my late thirties which stopped after several years. Now, I have an almost constant headache on lef< t side.BOn a regular basis it just hurts on left side; a painful neuralgiaI have had dentures since I was in my mid 20's but don't know if it's from the Rombergs. We don't have very good teeth in my familyFLeft side top lip much thinner. Mouth is also pulled to the left side.Besides the dry eye on left side, I have pain around the, especially the top of the left eye. It seems to occur when I'm also having the facial neuralgia./Minor, tongue is slightly smaller on left side.#However it was after the Romberg's.I do not want to provide my address or phone number. This is private info. But, I am appreciative of your effort. Doctor's I've encountered don't know anything about this nor do they care. Patty Burkett 215 princetonBenton72015 5017788166!crazymomma8166@aol is wrong email(discoloration,blind rt. eye,sunken areasthudding pain,sharp pain,\I have not told the doctors about it. none of the doctors here know what or how to treat me.:they have started to break,seems like I have lost calcium.,changed with the sunken areas of my forehead,blind in my right eye,pupil dilitated,sunkenOI had a soft sppot on my scalp very sunken it was at least 3 in.long 2in. wide.collegen injections;I fell off the dryer when I was 9 hitting my head very hardI have had plastic surgery 2 years ago. I improved in looks as not to be so noticable. It was very tramitizing.I became very depressed, it is a continuing process that I can't afford. Im not sure were to turn next.1602 N Rhodes Street, A-1 Arlington22209 703-351-5009wtrwlkr@hotmail.comJust to mention, the dark line that I now have vertically on my forehead, I would swear looks just like the one that used to run horizontally on the backsof my calf muscle which now that I think about seemed to disappear at the same time a line appeared on my forehead.but I do have bald patchespetit mal, I believe is what they said. I had and still do although it has calmed down com=nsiderably, twitches in my faces and neck on the righth side.Face,pain and tingling down the groove in my head6right side over cheak and middle to right side of headlI've been diagnosed with a mild case of Raynaud's. My hands, feet and nose are always cold and become purple and numb in cold weather. Recently, after exercising in the cold rain, my right index finger and like right toe started to ache and I experienced a sharp pain to the touch. The pain went away after about a week - and after staying inside, out of the cold.I've noticed the scleroderma plaques seem to start in places that have scars already - I have a scar on my right cheek, which is the result of having a mole removed as a teenager. I've noticed in the past few months, the scar has doubled in size. Additionally, I had liposuction several years ago and the largest plaque I have is on my hip and started at the site of one of the liposuction scars. I think my C-section scar might also be getting bigger.vHave an area, a oval spot (about the size of a small matchbox) under my left breast. I got it when I was about thirteen and got it diagnosed. It was a fairly rare type of skin disease that was said to have most likely been caused by an insect. But since I can't remember being bitten or whatever, and since the spot very much resembles the skin over my 'coup' (loss of fat, tissue etc), I presume it has something to do with Rombergs. This is akward since I have no other place on my body that's affected. Mind you, this is ALL my own speculations and have neither been confirmed or denied by any doctor I've come in contact with.>1st operation: Expander placed under skin over the 'coup' to stretch skin. This for... 2nd operation: An so-called "acrylat" (sort of plastic) were fitted to the bone to cover the 'coup' (left forehead, left side of skull (top of head)). 3rd operation: Fat injection + "nosejob". Piece of my left ear (!!) used to recover the damaged side of my nose. 4th operation: "Nosejob" unsuccesful, had the procedure repeated. After this last operation, at age 19, things were pretty fine until I had problem with a kind of bacteria undern the "akrylat"- implant. This caused the middle of my forehead to "bulge out" (due to fluids). Had this "drained" quite often, until it somehow disappeared. Appeared again last year, unfortunately this time with an inflamation near my left eye. A mistaken diagnosis led to surgery and the forming of a fistula. Fluids keep coming out of this, though it has become less at this time (02-02-20). Nevertheless, I will have the whole implant removed, the bacteria stopped and the fistula healed. Thereafter a there will be a repeating of operation 2 (se above).dfirst symptom was vitiligo around mouth and nose- He was 4 years old and I took him to an dermatalogist and was told to not do anything but watch it. 12-14 months later, I started noticing the atrophy of the face on that side. At times his face looks like it is dirty and many people comment on dirt being on his face. The vitiligo is not as noticebly now.Robert Cunninghamregional service manager_Right sinus very dry, bleeds easily, I believe because the tissue is very thin due to Rombergs.Stress, hot weather$NO COLOR CHANGE BUT VERY COLD HANDS. SARAH ZITOITALIAN, IRISH AND GERMANCERTIFIED PUBLIC ACCOUNTANT11766 631 476 5817loumer@worldnet.att.netAtightening feeling in fingers of left hand- like a trigger finger skin biopsy7methotrexate injections weekly topical steroidal creams lymes diseaseJtreated with amoxacillin times 3 weeks for positive titre and western blocOhioDeanasan@aol.comOn the right side of my face I started noticing wrinkle type lines above my lip and my chin, and thinning of the right side of my upper lip.2The right upper lip side is thinner than the otherI never used to think so, but I think Rombergs' the reason my left eye is severly farsighted 20/100 and I have a lazy left eye. My right eye is 20/20 and I was told that I was supposed to be right handed.I may have other problems related to Rombergs but I'm not sure. I am taking this test in hope that I can view other results from people with the same degree of damage to see if my Rombergs is responsible for other problems.?I was in an accident at age 25 and had post concussion syndrome12134 West 99th TerraceLenexa66215 913-492-0571fourquelles@hotmail.comTightness, aching, twitching, tingly sensations on the left side of my face with my left cheek progressively sinking in and my left nostril shrinking.A constant tightness, aching, twitching, tingly feeling. I take Ibuprofen for it because the 3 doctors I have seen have informed me that there is nothing they can do. It is something I have to live with.It causes my teeth and jaw to ache constantly. I avoid eating any chewy foods because that seems to exacerbate it. I quit smoking because that too seemed to make it worse.I have lost one upper molar on the upper left side, but the other one was able to be saved with capping, but the dentist was unsure for how long.kThe left side of lips sometimes twitch, especially the lower lip. It looks as if it is trembling sometimes.7I have floaters constantly, especially in bright light.%I was informed there is no treatment./Multiple Sclerosis, but a very distant relative Littletonkylacmb@yahoo.comUI don't personally but patches of white hair starting in childhood runs in my family.AlisaSisk@webtv.nethI developed a gray streak on the right side in my mid 20's - no other gray hair was present at the time.sI am far-sighted. The vision in my left eye has worsened over the past two years. My right eye used to be my worst.I have had increased joint pain in the past year. Anti-inflammatory meds seem to help. My skin is extremely dry - my hands look very old. I have acne roseacea and wonder if it is related.dI lost my hair on my crown (about the size of a quarter) prior to developing depression of the area.bpll@bellsouth.net;hemifacial atrophy, en coup de sabre, localized sclerodermachronic Illiotibial Band Syndrome which could not be explained; en coup de sabre, nose and right< side of face are slightly sunkenI don't know if I have migraines. I have headaches very often - sometimes so bad that I cannot concentrate on anything. I have never become nauseated though, but I have had difficulty looking at bright lights.nI've had glasses/contacts since I was 6 years old. I'm not sure of my eyesight, but I think I'm legally blind.8aunt - fibromyalgia; sister - Raynaud's, osteo-arthritisKI was in a car accident at age 16, and hit the headrest with my left cheek.AI honestly think severe stress is what has triggered my problems.I have pain and stiffness if I do not stay active. I developed Illiotibial Band Syndrome a year ago from running and have been in physical therapy for a year trying to figure out why it won't go away. My rheumatologist told me the muscles and tendons in mMy jaws lock together, especially when I am under stress since I was 11 years old. I was told it was TMJ. My teeth would not stay straightened when I had braces. They kept moving. LipsThe right side of my jaw, under the lower lip atrophied. For a year or so a Dr Franklin Ashley at UCLA Uiversity Medical Center, gave me silicon injections in my right cheek, above my right upper lip and under my right lower lip. This was definitely not tMy mother had loss of pigmentation and that was what she thought I had when she first noticed my skin was changing. My daughter was born with loss of pigmentation on her right leg.yI was in a serious automobile accident when I was about 8 years old. I had extensive trauma to the right side of my face.9Stress seemed to daargen the color in the affected areas.550 S. Van Ness #301 San Francisco94110 415-255-8817nickiesnow@hotmail.comyMy upper, right lip atrophied and I lost all muscle movement on the right side of my mouth--I can not pucker up very wellMy right eye is always irritated or dry. My vision in my right eye has deteriorated greatly in the past 3 years. I put oily drops in at night and tape my eye closed at night, which seems to sooth the stinging in my eye.1Right side of my tongue is smaller than the left.wI do have an exceptionally lumpy scalp--a huge indent on the crown of my head, dents on the sides and a lumpy forehead.Possibly, both of my parents have trouble with poor circulation, particularly on one side of the body but nothing as severe or debilitating as PRS136 willow streetwaltham02453 781-894-5073ejtaylor@mediaone.net8no- just nausea, flashing lights, need to be in the dark\atrophied and turned up. i drool occasionally while drinking and it is hard to eat sometimes)tmj and jaw spasms; eye socket sticks outi hav diabetes, asthma and graves disease. I was diagnosed with the diabetes at 15 and rombeergs followed. I also get ganglions on my hands and feet and have a shoulder and hip problem (scar tissue). No one ever associated them to romberg's. they always b221 S. Wolf RoadWheeling60090lkelly@d21.k12.il.us@Hit her chin when she was 2. She fell on the ground off a swing.Maybe the fall.3721 S.W. Arnold StreetPortlandOregon97219 (503)246-4522elisacw@juno.comADHD takes Ritalin, Started on this about 11/01. Chronic sinus problems. Cannot seem to relax. He sleep walks. We never know where to find him in the mornings. He rides a dirt bike (motorcycle) and plays Hockey. He has little to no fear. He doesn't cry much. Even when he has had stitches in his head, he doesn't seem to cry. He has an explosive temper when he gets made and will destroy his room or anything nearby. He had some fights at school, which is how he got on the Ritalin. And he also roams the classroom during lectures. Seth is smart when you can get him to focus. But it's like the rest of us are slow, and he can't slow himself down to be with us. He also has a lawnmowing business, and mows grass non stop in 110 degree weather. I don't know how he does it. Can't take a vacation with him, because he drives you nuts, picks fight with his other brother, Ben, whose adopted. He has no fear. He can't comprehend that we live near Dallas, TX and there are some people you should not approach. He has gone on car rides with strangers down the street, while we were looking all over for him. He can't make that connection for some reason that there are things in this world that you should use caution around. . But he is very outgoing, knows everyone everywhere, is not shy because of his problem, but it may just be too early as he hasn't hit puberty yet. This may all change then. He is aware that he is different, but the kids at school don't say much anymore, because he will fight back. (a little white haired scapper, small but fast). He also works out on a weight set while watching TV. He eats constantly. . His face looks worse than figure 4 below. It's almost like skin stretched over bone with a darkening area right at the left cheek bone.I would be very interested in the outcome of the above questions. I guess I put the questions on the first part of the survey. Sorry/ Tracey Adams housewife/mumabout 20the operation i had initially was fat taken from my back and placed in my cheek by micro surgery,the second had to lifted as it wouldn`t stay up. Ithen had silicone placed in my temple,not successful.The others were done because i persisted as i wasn`t happy wiyh the outcome.Nicola Lindsay HR AssistantnegI have terrible circulation in my hands and feet, sometimes they are cold for no reason, my hands, feet and sometimes legs can go purple and blotchy and my veins protrude out. Joanne Harris(Aged carer, mother, student, office workIt seemed to slow down a little when I was undertaking some alternative chinese therapies known as 'cupping', but it was very expensive and not that noticeable, although it made my head feel a little clearer.cI think maybe it did get worse when I was pregnant and shortly after, I thought it was just stress.QIt seems to get worse when I am stressed or tired or getting over a bad headache.I thought the fat injections were excellent, not too painful, no permanent scaring, only day surgery, with a pretty good result (so far). Rhonda DillMThere is a plastic plate in my forehead and in my jaw held by metal brackets.sara dunne nee rosenfield corcasion'full time mum regestered enrolled nursewhen i was around 17 years myjaw suddenly 'crunched'since then i've suffered from a clicking jaw whichi find makes it difficult to eat foods which requirealot of chewing or biteing%Bulimia poor body image , facial painaround 12 yearsarund 5-6 yearsEadanoids and toncilles removed and grommets fitted when i was 5 years|my surgery for the parry rhombergs was for cosmetic reasons only as my surgon dr ord said the disease had 'burnt' itself out Axel Wurster John Leuckcaucasion, white Corri D Carrcustomer serviceMy jaw will pull itself open and will not let me close it and sometimes it will lock shut and will not open. This happens a lot during my spasms.slowed down 25EMy pregnancy seem to bring the spasms out more. About 4 months along.sThe Elavil seemed to help and I was on the klonopin to but I was burising to easyly so they took me off the elavil.Gjaw sergury step cut and pull forward and out to fit with my upper jaw.SHARON M STONECIPHERMEDICAL BILLING SPECIALISTI FAILED TO MENTION IN PART ONE OF THE SURVEY THAT I ALSO AM MISSING THE EYELASHES FROM THE UPPER INNER HALF OF MY LEFT EYE. -I ALSO HAVE DOUBLE VISION WHEN MY EYES ARE NOT DIRECTLY FOCUSING FORWARD BECAUSE THE LEFT AND RIGHT EYE ARE NOT SET SYMETRICALLY IN THEIR SOCKETS.)EARLY 30'S TO THE BEST OF MY RECOLLECTIONNOTHING THAT I AM AWARE OF.LATE 20'S TO EARLY 30'S:IT SEEMED TO ME THAT BEING PREGNANT SEEMED TO SPEED IT UP.Georgina Raper Tom Laurich4Caucasion -- grandparents are Yugolsovian and GermanChemical EngineerJennifer HaleySchool teacherGIf I chew on the right side of my mouth, my jaw will sometimes lock up.Tiffany Schmoyer caucasion/little American Indiancollege studentI have a lot of jaw pain. As far as lock jaw, I am not quite sure how to answer that one. My jaw has never loc< ked in the open or closed position, but I do have difficulty opening my mouth wide. I guess you might say its range of motion is slightly limited. Sometimes my jaw feels stiff, usually after doing something to irritate it like a lot of chewing to eat. Yet, the stiffness is not very bad mostly just painful.1: Neuropediatrics 1995 Dec;26(6):306-9 Related Articles, Books, LinkOut Progressive facial hemiatrophy with multiple benign tumors and hamartomas. Derex L, Isnard H, Revol M. Service d'Explorations Neurologiques, Centre Hospitalier Lyon-Sud,27427.5299.5mec1118@aol.com is wrongmartyh29@home.com is wrong41403316.5442.5kate 102@socal.rr.com is wrong Liz TaylorVailannkanni Fernandesec/o Louis Fernandes, Bhal Blding Gandhi Chowk Sawantwadi District Sindhudurg 416510 Maharashtra IndiaJW.Sheat@xtra.co.nzDear Dr Jon I do not have Parry Romberg Syndrome but have a friend in India (An Indian) who does. I have made contact on her behalf with the support groups and have found your survey. I have tried to print it off but have been unsuccessful as it prisylviahaj@hotmail.comydeq@satyam.net.in is wrong34everex@optusnet.com.au is wrong17.5cmacmom@home.com is wrongIUSAnnabelle has a foot drop on her left leg. She also has an aneurysm in the carotid artery on both her left and right sides in her brain. She has a problem with the muscles in her left hand, which are slowly shortening, causing her fingers to curle over.43'joint pain in fingers, elbows and knees1813.5:My left nostril was disfigured (sort of "cleft" above it).wI don't know if it was already mentioned, but I lost the angle of my inferior jaw and my jaws were not closing properlyBrian123 Fake Street Mission ViejoCa945548 blah@blah.com(growth defect on left side of whole bodyright: Half green half brownmissing tooth on left sideDeviated septumGrowth Hormone TherapyI also have atrophy of the left side of my nose and several bald places in my scalp. I also have anisicoria - my left pupil tends to be larger than my right.U.K.WDuring teen age years I would have urges to throw myself to the floor and jerk around ,Put on email nag listYespositiveYSeems like it progressed into my skull from around age 17 to 19 and my chin at same time.Social Work StudentIt has never progressedMine is not progressive.|The operations were wonderful when I had them done. As I get older the implants and tissue graft are obvious as I get older. &Iarovikova Lada Given of birth 02/01/1969 Russia Room: Course B. Aires 35. 20124 Milan Italy Telephone Gsm: +39 335 6156650 Email: 3356156650@ tim.it Fax GSM: +39 335 5111941 Translate through Internet!!!!! Object: It suspects syndrome of Parry-Romberg Synonyms: Progressive Facial Hemiatrophy Progressive Hemifacial Atrophy Romberg Syndrome Prs Hfa In March 2001, I have found on the left side of my ace, one smallest wrinkle localized along the nasolabiale fold. For this reason they are turned to me to an aesthetic doctor, to which it has applied a product me for sottocutaneo filling: restiline.. L.effetto of the product, than usually has a duration of 4/5 months, on me has had the duration hardly 12 hours. To three months dall.applicazione the wrinkle has become more obvious with in adding, in the same point, one small fossettina. I have rifared an ulterior filling with restiline. increasing the amount of the product. Also this time the duration has been minimal (24 hours). They are turned me, to this several point to aesthetic doctors and medical dentists, supposing that a probable cause could be chargeed to the teeth. The unanimous diagnosis has been: wrinkle d.espressione.. In this way the heart in peace is put me. In November 2001 to a visit carried out from a plastic surgeon, a doctor of its staff, is itself shrewed that my left side close to the mouth strangely re-entering and in fact after was un.accurata visit has been able to find one long 2 cm and wide recess 1 cm with lack of woven adiposo and the grain of the modified skin more somigliante to the peel d.arancia. The diagnosis suspects: Syndrome of begun Parry-Romberg Ho, once re-entry in Italy, a search deepened on the type of pathology and are turned to me to a neurologist and having made behind its several council examinations of which in attached (n1,2,3) Clinical folder (to memory) Translate through Internet!!!!!  - Age of 5 years (1974) diagnosis gastrite with shelter hospital worker in Russia for approximately two weeks (documentation absent) - Ages of 14 years (1983) after visit near the school virus hepatitis B (nel.giro.di two months, 50 other persons ne are are infected). Ricoverata a month in hospital - Age of 16 years (1985) I practiced ski of bottom to agonistico level and with practice with weights, blow of whip to the zone to lombare cured with elettrostimolazione. - Age 18 years (1987) gengive bleeding with paradentosi. From 1990 they have come in Italy from Russia - In the 1991 desquamazione of the leather capelluto (all the head and behind the orecchie). Lately present also on the forehead and wings of the nose. Cured with: Ecoval fluid and shampoo Nizoral.. - In 1997 the bleeding gengive with paradentosi above all in the left side advanced side, participation near a Stomatologico. Institut< e - In the 1999 blow of the witch with cure of Voltaren injections - Nell.estate of 1999 is begun with micosi the left inch one cured ungueale in order very two years. In spite of the cures, other nails partially had been emptied (under). After un.ulteriore dermatologica visit in the July 2001 two medical different after outcome negative of the micotico test have been diagnosed: psoriasi ungueale.. Currently the state of nails is improved - From 1999 until today in the left part zone bearing (culotte) is present a indolenzimento constantly with variable intensity. Visit in Russia and diagnosis: vertebre lombari crushed and weakening bone to level hip (you see documentation attached n.5). - In the 2000 they have been found two small nodes to me to the tiroide (you see documentation attached n.4). - In ingrossato July 2001 linfonodo to the left breast (you see documentation attached n.4). - P.S. They are a hyperactive subject in the private life, but above all on the job. In 1999 I have endured a fort trauma (dead women of my mother) with consequent physical weakening. For the duration of approximately 6 months from the fact I have found rigonfiamento of all ocular l.orbita. History of my family (to memory) Translate through Internet!!!!!  maternal Grandmother. Problems of circulation to the inferior limbs. All.et of 55 years paralysis of the skillful side and with consequent illness to bed for years 12. Passed away in 1997 for physical deperimento. Maternal grandfather. No important problem and tutt.ora in life (years 75) paternal Grandmother. No data or memory. Passed away. Paternal grandfather. No data or memory. Passed away. Mother. To approximately 40 years semiparalysis to the mouth and after approximately 6 loss of the sensibility of the foot (not memory which). All.et of 48 years death for ictus. Pap . Deceased All.et of 33 years for ictus. Previously it seems has suffered from epilepsy. Sister (same mother. various father) Diagnosed from birth the syndrome: nanismo or acondroplasia. Iarovikova Lada Given of birth 02/01/1969 Russia Room: Course B. Aires 35. 20124 Milan Italy Telephone Gsm: +39 335 6156650 Email: 3356156650@ tim.it Fax GSM: +39 335 5111941 Translate through Internet!!!!! Object: It suspects syndrome of Parry-Romberg Synonyms: Progressive Facial Hemiatrophy Progressive Hemifacial Atrophy Romberg Syndrome Prs Hfa In March 2001, I have found on the left side of my ace, one smallest wrinkle localized along the nasolabiale fold. For this reason they are turned to me to an aesthetic doctor, to which it has applied a product me for sottocutaneo filling: restiline.. L.effetto of the product, than usually has a duration of 4/5 months, on me has had the duration hardly 12 hours. To three months dall.applicazione the wrinkle has become more obvious with in adding, in the same point, one small fossettina. I have rifared an ulterior filling with restiline. increasing the amount of the product. Also this time the duration has been minimal (24 hours). They are turned me, to this several point to aesthetic doctors and medical dentists, supposing that a probable cause could be chargeed to the teeth. The unanimous diagnosis has been: wrinkle d.espressione.. In this way the heart in peace is put me. In November 2001 to a visit carried out from a plastic surgeon, a doctor of its staff, is itself shrewed that my left side close to the mouth strangely re-entering and in fact after was un.accurata visit has been able to find one long 2 cm and wide recess 1 cm with lack of woven adiposo and the grain of the modified skin more somigliante to the peel d.arancia. The diagnosis suspects: Syndrome of begun Parry-Romberg Ho, once re-entry in Italy, a search deepened on the type of pathology and are turned to me to a neurologist and having made behind its several council examinations of which in attached (n1,2,3) Clinical folder (to memory) Translate through Internet!!!!!  - Age of 5 years (1974) diagnosis gastrite with shelter hospital worker in Russia for approximately two weeks (documentation absent) - Ages of 14 y<dears (1983) after visit near the school virus hepatitis B (nel.giro.di two months, 50 other persons ne are are infected). Ricoverata a month in hospital - Age of 16 years (1985) I practiced ski of bottom to agonistico level and with practice with weights, blow of whip to the zone to lombare cured with elettrostimolazione. - Age 18 years (1987) gengive bleeding with paradentosi. From 1990 they have come in Italy from Russia - In the 1991 desquamazione of the leather capelluto (all the head and behind the orecchie). Lately present also on the forehead and wings of the nose. Cured with: Ecoval fluid and shampoo Nizoral.. - In 1997 the bleeding gengive with paradentosi above all in the left side advanced side, participation near a Stomatologico. Institute - In the 1999 blow of the witch with cure of Voltaren injections - Nell.estate of 1999 is begun with micosi the left inch one cured ungueale in order very two years. In spite of the cures, other nails partially had been emptied (under). After un.ulteriore dermatologica visit in the July 2001 two medical different after outcome negative of the micotico test have been diagnosed: psoriasi ungueale.. Currently the state of nails is improved - From 1999 until today in the left part zone bearing (culotte) is present a indolenzimento constantly with variable intensity. Visit in Russia and diagnosis: vertebre lombari crushed and weakening bone to level hip (you see documentation attached n.5). - In the 2000 they have been found two small nodes to me to the tiroide (you see documentation attached n.4). - In ingrossato July 2001 linfonodo to the left breast (you see documentation attached n.4). - P.S. They are a hyperactive subject in the private life, but above all on the job. In 1999 I have endured a fort trauma (dead women of my mother) with consequent physical weakening. For the duration of approximately 6 months from the fact I have found rigonfiamento of all ocular l.orbita. History of my family (to memory) Translate through Internet!!!!!  maternal Grandmother. Problems of circulation to the inferior limbs. All.et of 55 years paralysis of the skillful side and with consequent illness to bed for years 12. Passed away in 1997 for physical deperimento. Maternal grandfather. No important problem and tutt.ora in life (years 75) paternal Grandmother. No data or memory. Passed away. Paternal grandfather. No data or memory. Passed away. Mother. To approximately 40 years semiparalysis to the mouth and after approximately 6 loss of the sensibility of the foot (not memory which). All.et of 48 years death for ictus. Pap . Deceased All.et of 33 years for ictus. Previously it seems has suffered from epilepsy. Sister (same mother. various father) Diagnosed from birth the syndrome: nanismo or acondroplasia.Probs with JawSpeeders da 3 mesi#Dieta biologica e voglia di guarireLeah Lefkovits"I would not no, she is still young Denise KappelAirline Reservationist/Momreconstruction or remapping of veins was part of first surgery so could provide blood flow to new tissue that was implanted. Some of tissue took but most did not.tDid a couple of fat implants around eyes but none of them took. Fat was taken from my leg twice and my omentum once. Louise SmalIT TechnologistI always complain about pain in my joints and muscles - my knees, elbows, neck, lower back, chest bones and muscles, ribs, etc. They have done tests for rheumatoid arthritis and Ankylosing Spondylitis (sorry, spelt it incorrectly in the first section of the survey). My father suffers from Ankylosing Spondylitis and often gets inflammation in his eyes/iritis. All my tests have come back negative though. I get sinusitis, hayfever and allergies quite often. Hypertension (high blood pressure) - both my father and his mother have it.not entirely sure, but there was a long space of time where I didn't get any of the symptoms. Sometimes I think the right side of my face is getting even smaller, but it could judt be my imagination.I don't drink or smoke, but am slightly overweight. I did lose some weight at one stage and it made the fatter side of my face match in better with the thinner half (if that make any sense). Sometimes when I'm under too much pressure at work or home, I seem to get the pain in my face more often. The only medication I take is for my blood pressure. I can't really see whether it's progressed in these past 3yrs or so - sometimes I think it's getting worse, but maybe I just think so when I'm feeling down.&I'm not on any medication. The Professor I seen in 1999 explained to me that I could have the operation where they take muscle/tissue from another part on my body and implant it (this would mean more than one operation), but to be honest, I'm scared. So basically I'm not getting any treatment.In the last six months my hands and feet have been noticeably cold, but do not change colour with the cold weather. We have not had any Winter to speak of on the Sunshine Coast with temperatures ranging form 13 - 25 degrees Celsius.Narelle Dorothy CoxcJust recently my jaw was so sore that I thought I'd dislocated it somehow, but it has never locked.En coup or sclero overlap"I  h$_ .lW8r=sxtH wT ]@qgo̚zB΅+ێ0s3x HP3$%r +Y!\8,G:CoMa[*gnoF|O 2 =  &.  5X<oSX] Tt +m xYpmZ !)S|0{9GXSRr\!cguq5pW\r_ҩu _D7azmou[2]4ТMK#\53 #sȿ09g G)(зP([ eqo/vJ mz1A8S h0sh, -] e q 0s I " , 8 b dC lBR p Y 8 ` $m 0u :W{ a| Q [V  ©  o U= P # 620100Z ~<nx0 ears (1983) after visit near the school virus hepatitis B (nel.giro.di two months, 50 other persons ne are are infected). Ricoverata a month in hospital - Age of 16 years (1985) I practiced ski of bottom to agonistico level and with practice with weights, blow of whip to the zone to lombare cured with elettrostimolazione. - Age 18 years (1987) gengive bleeding with paradentosi. From 1990 they have come in Italy from Russia - In the 1991 desquamazion  "p el?? 3` !>` !?` &$@` !A3d23 M NM4  3QQ ;Qi ;Q3_4E4D$% M 3O&>Q4$% M 3O&AQ4FAF w 3O$ 3 b#M43*#M4% M TM3O$&?Q ,Age of onset (years)'4% [yMMZ3O&@Q .Number of respondents'4523   f  d@43" 444 e0-56-1011-1516-2021-2526-3031-3536-4041-45 46-50eJ@H@E@<@(@ @@?@ ?e>    dMbP?_*+%"0??4U} } } } }  } U wwGS     0asfz0 "ID+""What is the name of your condition'"Have any other names been used"Line?" Jaw / Cheek" Chin indent~ 5T@)En coup de sabre6Parry-Romberg Syndrome555~ 5\@)En coup de sabre*6!initially thought to be aleopecia555~ 5[@(En coup de sabre 6555~ 5R@(En coup de sabre6parry romberg morphea555~ 5 `@)En coup de sabre 6555~ 5Z@)En coup de sabre 6555~ 5b@(En coup de sabre6morphoea555~ 5K@(En coup de sabre6Romberg555~ 5a@ (En coup de sabre 6 5 5 5~ 5b@ )En coup de sabre 6 5 5 5~ 5b@ (linear scleroderma 6en coup de sabre 5 5 5~ 5 @ 6 Parry-Romberg 6 Scleroderma 5 5 5~ 5Y@ 6 Parry-Romberg 6 5 5 5~ 5E@6 Parry-Romberg6Facial Hemiatrophy555~ 5@6 Parry-Romberg 6555~ 5D@6 Parry-Romberg/(&Linear Scleroderma, 'en coup de sabre'555~ 5X@6 Parry-Romberg(en-coup de sabre555~ 5@6 Parry-Romberg%)Scleroderma en coup de sbare555~ 5@6 Parry-Romberg 6555~ 5@U@6 Parry-Romberg 6555~ 5"@6 Parry-Romberg 6555~ 5M@6 Parry-Romberg 6555~ 5&@6 Parry-Romberg 6555~ 5W@6 Parry-Romberg 6555~ 5.@6 Parry-Romberg 6No555~ 5C@6 Parry-Romberg&)Scleroderma'en coup de sabre'555~ 5S@6 Parry-RombergI6@Yes, PRS (as indicated above) and progressive facial hemiatrophy555~ 5L@6 Parry-Romberg 6555~ 5N@6 Parry-Romberg 6555~ 5P@6 Parry-Romberg 6no555~ 5J@6 Parry-Romberg6Hemi-Facial Atrophy555Dclr}\q\\dc\\ndYkYiuYYYYYY[vYY[ w!wG"#$S%&'()*+,-./0102345678as9f:;<=z0>?~ 5@Q@ 6 Parry-RombergB (9Semi Facial Atrophy, Linear Scleroderma, En Coup De Sabre 5 5 5~ !5Q@!6 Parry-Romberg !6!5!5!5~ "5I@"6 Parry-Romberg "6"5"5"5~ #5V@#6 Parry-RombergL#(Cthe 'en coup de sabre' as the line bewteen normal and diseased area#5#5#5~ $5I@$6 Parry-Romberg $6$5$5$5~ %5W@%6 Parry-Romberg %6%5%5%5~ &5S@&6 Parry-Romberg&6Rombergs Syndrome&5&5&5~ '5T@'6 Parry-Romberg '6'5'5'5~ (5@T@(6 Parry-Romberg (6(5(5(5~ )5B@)6 Parry-Romberg )6)5)5)5~ *5U@*6 Parry-Romberg'*)Scleroderma/Linear Scleroderma*5*5*5~ +5A@+6 Parry-Romberg +6+5+5+5~ ,5@V@,6 Parry-Romberg ,6,5,5,5~ -5S@-6 Parry-Romberg-6hemifacial atrophy-5-5-5~ .5@\@.6 Parry-Romberg=.64I have Facial Hemiatrophy secondary to Parry Romberg.5.5.5~ /5@^@/6 Parry-Romberg /6/5/5/5~ 05^@06 Parry-Romberg06Hemofacial Atrophy050505~ 15]@16 Parry-Romberg16facial hemiatrophy151515~ 25:@26 Parry-Romberg 26252525~ 35`@36 Parry-Romberg 36353535~ 458@46 Parry-RombergG46>Every Dr. in my life has taken a guess. All wrong up till now.454545~ 55@_@56 Parry-Romberg 56555555~ 65@`@66 Parry-Romberg<6)3ROMBERG SYNDROME AND SCLERODERMA 'en coup de sabre'656565~ 75`@76 Parry-Romberg 76757575~ 85``@86 Parry-Romberg86hemi facial atrophy858585~ 957@96 Parry-Romberg96hemi-facial atrophy959595~ :5?@:6 Parry-Romberg :6:5:5:5~ ;5`a@;6 Parry-Romberg ;6;5;5;5~ <5a@<6 Parry-Romberg <6<5<5<5~ =5[@=6 Parry-Romberg)=6 Hemifacialatophy (nothing added)=5=5=5~ >5a@>6 Parry-Romberg >6>5>5>5~ ?5Y@?6 Parry-Romberg ?6?5?5?5DllYYYYjYYYwYYkYkkYYYYllYYYyY@wAwGBCDSEFGHIJKLMNO(PQ0RSTUVWXasYfZ[\]z0^_~ @5A@@6 Parry-Romberg @6@5@5@5~ A55@A6 Parry-Romberg A6A5A5A5~ B5 b@B6 Parry-Romberg B6B5B5B5~ C5$@C6 Parry-RombergC6MorphoeaC5C5C5~ D5_@ D6PFHA D6D5D5D5~ E5T@ E6PFHAE6Romberg's DiseaseE5E5E5~ F5a@ F6PFHA F6NOF5F5F5~ G5^@ G6PFHA G6G5G5G5~ H5Q@ H6PFHA H6H5H5H5~ I5K@ I6PFHAI6BIRTH MARK? AS A CHILDI5I5I5~ J5L@ J6PFHAJ6Rombergs SyndromeJ5J5J5~ K5`b@ K6PFHAK6Left HemiatrophyK5K5K5~ L5@R@ L6PFHAL6 Parry RombergL5L5L5~ M5D@ M6PFHA M6M5M5M5~ N5_@ N6PFHAN(linear morpheaN5N5N5~ O53@ O6PFHAO6one doctor in about 1980 thought it might be Rombergs - this was the first time Rombergs had been mentioned. since then I have decided that it is Rombergs.O5O5O5~ P5,@ P6PFHA P6NoP5P5P5~ Q5@@ Q6PFHA Q6Q5Q5Q5~ R56@ R6PFHAR6en coup de sabreR5R5R5~ S5@[@ S6PFHA S6noS5S5S5~ T5[@ T6PFHA T6T5T5T5~ U5\@ U6PFHAU('en coup de sabre'U5U5U5~ V5B@V6RombergV6Facial AtrophyV5V5V5~ W5@@W6Romberg W6W5W5W5~ X5J@X6Romberg X6X5X5X5~ Y5C@Y6Romberg Y6Y5Y5Y5~ Z5<@Z6Romberg=Z64progressive facial hemiatrophy - linear scleroderma.Z5Z5Z5~ [5E@[6Romberg[6hemi-facial atrophy[5[5[5~ \5H@\6Romberg \6No\5\5\5~ ]5=@]6Romberg']6Parry-Romberg Syndrome/Disease]5]5]5~ ^59@^6Romberg-^)$en coup de sabre, linear Scleroderma^5^5^5~ _5F@_6Romberg_6Hemifacial atrophy_5_5_5DlYYYaPaRPPfa`]P^RP`RPbaSSSfUqw`wawGbcdSefghijklmnopq0rstuvwxasyfz{|}z0~~ `5F@`6Romberg `6`5`5`5~ a5G@a6Romberg a6Noa5a5a5~ b5;@b6Romberg b6Nob5b5b5~ c5G@c6Romberg c6c5c5c5~ d5H@d6Romberg d6d5d5d5~ e5>@e6Romberg e6e5e5e5~ f5]@f6Romberg f6f5f5f5~ g5W@g6Rombergg6Parry -Rombergg5g5g5~ h5*@h6Romberg4h(+? Linear/Morphea Scleroderma with Romberg'sh5h5h5~ i50@i6Romberg i6i5i5i5~ j51@j6Romberg j6j5j5j5~ k52@k6Romberg k6Nok5k5k5~ l5@Y@l6Romberg$l6Romberg's Hemifacial Atropyl5l5l5~ m5@m6Romberg/m(&Hemifacial Atrophy, 'en coup de sabre'm5m5m5~ n5\@n6Romberg n6n5n5n5~ o5@o6Romberg o6o5o5o5~ p5@]@p6Romberg p6p5p5p5~ q5^@q6Romberg q6q5q5q5~ r5_@r6Romberg r6r5r5r5~ s5`@s6Rombergs6soft tissue atrophys5s5s5~ t5`@t6Romberg t6t5t5t5~ u5`@u6Romberg u6u5u5u5~ v5@a@v6Romberg v6v5v5v5~ w5Z@w6Romberg w6w5w5w5~ x5U@x6Romberg x6x5x5x5~ y5N@y6Romberg y6y5y5y5~ z5O@z6Romberg z6z5z5z5~ {5@P@{6Romberg {6{5{5{5~ |5P@|6Romberg |6|5|5|5~ }5P@}6Romberg }6}5}5}5~ ~5R@~6Romberg ~6~5~5~5~ 5@6Romberg 6555Ds lSUUSSSSa~SSUnySSSSSfSSSSSSSSSSSwwGS~ 5U@6Romberg 6555 ~ 5M@6Romberg 6555 ~ 5V@6Romberg 6555 ~ 5V@6Romberg 6555 ~ 5@W@6Romberg 6555 ~ 5@X@6Romberg&6Romberg's hemiffacial atrophy555 ~ 5X@6Romberg 6555 ~ 5X@6Romberg 6555 ~ 5?6Romberg7Localized scleroderma555 ~ 5@S@6Romberg 65550'14 coup de sabre with cheek involvement'11 coup de sabre without cheekKaaaaa~aav>c@   dMbP?_*+%"??thU} }  } "} !} U} } } } } q} q} U} !!.} ""} ##q} $$ } %%q} && } ''} ((} ++} 55} 66 Column BXPPT0PPPPPPPP P P P P PPPPPPPwPPP PwPPGPT0Pw PwP]PPT0~ ~ 7@ Mandy PerroAmerican  wife/mother A   I do not have Lupus, but my mother does have a form of it. (she doesn't have the butterfly rash) I do not have rhuematoid arthritis ( although my mother's side of the family has a very strong history); I do have osteoarthritis in my hips ( I was born withHad TMJ; has orthoganathic (?) surgery to pull out the upper jaw ( alot ) & lower jaw. I have 'the smallest adult mouth" that most dentist & anesthiologists have ever seen. I have a very small opening when I open my mouth the most that I can.I have a history of mastoid disease on left side (PRS side) & profound hearing loss on that side as well. Have migraines--seem to be centered in left temple mostly. I was born at 7 months gestation, weighing 2.5 pounds. Having vision problems in my left e J!Awhen I had the jaw surgery in my 20s, that seem to exacerbate it."# see above$%&SURGERY'surgery(~ )@*+Somewhat Successful,-./01Somewhat Successful2345Non-bone6bone grafted from my scalp to left eye orbit. When they attempted to implant a non-bone cheek bone, my body rejected it & they had to remove it. I was also left with a dark dimple underneath the eye.7 Unsuccessful8Z9??????????@?FGHIJKL MMildN@@O~ ~ :@Pip Rutherford Australian  Sales Rep  A Negative  Especially during the winter months (some mornings get to -4 degrees) my hands will be like blocks of ice and the rest of my body beautifully warm. My right hand can be colder than the left at times. For instance, today is a very mild to warm day and my rI ticked "yes" for Ankylosing Spondylitis. I think I mentioned to you before about my back problems and operation. I had spondylolisthesis which resulted in a fusion and instrumentation at the L5-S1 and a laminectomy. So I do not know whether they are oneIn my early teens !"#$% &(~ )@*+ Successful,-./0123456Fat was taken from my stomach and implanted in my right cheek area (just like stuffing a chook!!) Extra fat was implanted because over a period of about 12 months it subsided. The operation was an experiment (29 years ago)because the doctor did not know h7 Successful8I came beack to this spot after seeing the pictures. I have shrinkage of my right thigh with thinning of the fatty tissue. This was originally diagnosed as scleroderma after a biopsy was done. So my question is "Is there a connection with scleroderma and Z9??FGHIJKLMModerateN??O~ ~ ;@ Julie BassettEuropean. %Human Resource/Training & Development  O Positive  I have suffered from Asthma since I was 5 after having whooping cough and pneumonia (I hope that spelling is right). It isn't severe though.ZQI do have times when I get some joint pain on my affected side but not too often.Gallbladder problems (Gallbladder removed 5 years ago) Back trouble (L5 disc disease) I also have odd teeth - on the related side, I have a molar which has one prong instead of four although one dentist says he thinks it is actually my wisdom tooth as I dAbout 19 !It's hard to tell but I did try a homeopathy treatment and large doses of vitamin B (injections once a week for 6 weeks, I'm not sure on the amount but could find out if you're interested)"#$% &(~ )?*+ Successful,-./0123458Z9FGHIJKL MMildNO~ ~ <@ Mitchell Hyde australian   MDjaw has gone out of shape. teeth don't close properly on right side.right eye has sunken back a bit and dose'nt close properly somtimes ,when he is asleep. having trouble with his mouth. dribbleing uncontrolable. xome trouble drinking from cup. .!%after treatment, already talked about"#four and a half$% &''(we sent info with first survey)*+,-./0123458Z9@@?@@??FGHIJKL MMildN&@@O~ ~ =@Maecil Maris HiltonAmerican-- German! retired-was bank officer       !"#$% &(~ )@*+ Unsuccessful,-Somewhat Successful./ Unsuccessful012345%6Silicone implant on forehead7Somewhat Successful8Z9??@?@@@??@??FGHIJKLMSevereN$@ @O~ >@ Lucian Smith caucasian military  AB Negative  /&My hands tend to get cold very easily.My blood type is AB-, but I could not select this above. I do have a problem with my left eye becoming dry because my eyelids do not completely close. 22 !"#$% &'|(sMy rombergs seems more pronounced in direct correlation with the amount of sleep I get. Less sleep, more pronounced~ )@*+,-./Somewhat Successful0123458Z9@?@???FGHIJKLMModerateN@?O~ @@Kimberley McMichael.%Caucasian- (German, Swedish, English)$ Speech Language Pathologist  A Positive  a gestational autoimmune disease- antiphospholipid antibodies during pregnancy The antibodies effect the blood's clotting factor causing it to clot more quickly which results in the babies low birth weight and possible miscarriages and blood clots in the  16 and 30 !decrease in stress, and active exercise, It began at 15 when I hit puberty. After my body adjusted to the new hormones the disease seemed to stop a year later. During the first year of the disease I lost tissue under my eye with hyperpigmentation, but no "#age 25 and also age 29$>%&STRESS'zpreganancy-possibly related to hormones again and stress, lack of exercise and poor diet all seems to cause it to speed up(I feel that regular exercise and stress reducing exercise like yoga have a significant impact on improving circulation and increasing immunity and causing the disease to slow down. Also.... I feel that improving my diet by limiting animal meats and produc)*+,-./012345Alloderm6I am scheduled to have alloderm insertion. Alloderm is an inert sterilized skin in which the cells have been removed to avoid a reaction. Alloderm is now being used instead of silicone. My surgeon feels that fat injections which he used in the past were n78|I will send you an email about the success of my surgury in November as it takes about 2 months for the swelling to go down.Z9????FGHIJKL MMildN@?O~ @@Michelle MacLellan Caucasian Insurance Salesperson  Negative   Approx 22 years old !"#$% &(~ )@*+Somewhat Successful,-./ Successful0123456I have had a muscle flap implant in my cheek. The muscle was harvested from my right leg. It is also the right side of my cheek in which has atrophied. I also had a small dent in my forehead. She used a artificial implant for this area. The operation took7 Successful`8WNOTE: My 2nd Cousin has been diagnosed with Scleroderma and my mother has Fibermyalgia.Z9?@@??@?FGHIJKLMModerateN @@O~ A@Meagan Elizabeth Lee-$White, Irish/French/English Heritage  none  Negative  (written by Meagans' mom, Ellen) Meagan has trouble with her extremities, poor circulation? Her fingers/hands get chilled easily and turn very whiteEpilepsy, currently under treatment with Neurontin. Left side impairment(lack of right brain function), facial atrophy, dental work done (braces & retainer) to correct teeth alignment. Headaches (migrane-type), counseling for depression. Trial of medicati 17 !" #9$%&PUBERTY?'6rapid growth (age appropriate) onset of periods maybe.(~ )?*+,-./0123456Meagan had a heel-cord lengthening (left leg) to improve her gait and make her be able to walk better (her foot more flat to the ground) she was becoming rapidly unable to run and limped badly. We tried a brace for over a year to stretch out her leg.7Somewhat Successful8Z9@?@?@??@@@@FGHIJKLMModerateN.@"@O  ~ A@    Kathleen Goodspeed White/American . %Vocational Counselor/Graduate Student B Positive                u lMy jaw sometimes remains open and is exceedingly painful and I need to physically shut my mouth with my hand Headaches, severe body aches and exhaustion - which usually occurs with the headaches in the fall. Okay this is a wierd one. After my last surgery which was 15 months ago I broke out into a severe outbreak in my genitials. They thought it was Herpes but I ' off and on and then progresses  !Hard to tell - I just went to the doctor and he said that my cartlidge in my nose is being reabsorbed. It appears to progress in the fall and stop in the late winter ", ##22 after I had my son it went crazy $? % & 'My disease had stopped at the coup de sabre and when I became pregnant or after I delivered I lost the whole side of my face relatively quickly (~ )$@ * + , - . / Successful 0 1 2 3 4 5Tissue Expander 6Tissue expander - unsuccessful- infection - many revisions as the disease continues to progress. Much to do with my nose. Also a lip flap. 7 Unsuccessful 8Z 9???@F G H I J K L MSevere N@O  ~ B@     Adele Liu Italian/American  Teacher                J AMy hands are usually cold and sometimes have a tingling sensation     late 30's  ! " # $ % &STRESS 'Stress (Truthfully, I have no idea what provokes the continuing atrophy. My CT scan revealed that even my sinuses have atrophied. And I feel the atrophy is continuing. In part, that my be a factor in why a reconstructive surgeon will not perform corrective surger ) * + , - . / 0 1 2 3 4 58Z 9@???@???@??F G H I J K L MSevere N$@@O  ~ C@    Karen E.A. Smith  caucasian ( behaviour management specialist  Positive                 pain in the left side of my jaw and it has tempoararily locked on occassion .. nothing severe or long - lasting ... just enough to cause concern then disappear again! suspect: bullous lung disease last winter ... saw a specialist who determined that there was little to be concerned about... did not confirm that diagnosis.    ! " # $ % &) * + , - . / 0 1 2 3 4 58Z 9?@?@@@@?@?@@??F G H I J K L MMild N&@&@O  ~ D@     Lory Bricco White  Registeres Nurse O Negative                 My jaw does "lock up" briefly from time to time - also, I tend to "gring" my back teeth - not while asleep, but I while I'm awake.  " approx 33-35 years of age ? !6Plaquenil therapy appeared to slow progression of sx's " #currently (43years old) $ % &DRUGSU 'LI'm no longer taking plaquenil - I suspect this is why the sx's have sped up ( none known~ )? * + , - . / 0 1 2 3 4 5EYE 6The doctor did surgery on my "good eye" (right)to make it appear more symmetrical to my affected eye (right) - It did make my eyes more symmetrical, but now my right eye appears to be receding again and my eyes are about as asymmetrical now as they were b 7Somewhat Successful 8Z 9????F G H I J K L M Very Mild N@?O  ~ D@     Kathryn Large 6 -Administrative Assistant Construction Company                     started 4 ended 4  ! " # $ % &(~ )@ * + , -Somewhat Successful . /Somewhat Successful 0 1 2 3 4 5 6silicone implant for cheekbone - also had surgeries to remove excess tissue. Was always around 100 lbs. Now am 120 so face put on weight and sagged - bummer. Need facelift or removal - going to get second opinion - surgeon concerned about nerve damage wit 7 Successful 8Z 9F G H I J K L M Very Severe NO~ E@Cal. MayWhite automotive painter       !"#$% &(~ )?*+ Unsuccessful,-./ Unsuccessful0123458Z9???FGHIJKLMModerateN@?O~ F@ Marie Winget Caucasian5 ,house wife / "Hallmark" card clerk part time  O Positive    !"#$% &(~ )$@*+Somewhat Successful,-./Somewhat Successful01Somewhat Successful23458Z9?@??@???@FGHIJKLMSevereN@@O~ F@ Sandra ShawIrish caucasian& Medical Laboratory technician  O Negative  zqI would rate it as moderate. My jaws crack every time I open my mouth but it's because my jaws are an uneven size Possibly ~ 18 years old !"# 14 years old$%&I'@Probably just a growing spurt, that may have emphasised it more.(~ )@*+ Unsuccessful,-./ Unsuccessful01234 578One of the reasons I was given for the lack of success by the surgeon was that the site where they took the flap/graft from (on my back, same side as the affected side of my face)seemed to have smaller than expected blood vessels. Near this site I also ha"9FGHIJKLMModerate NO~ G@Jennifer L Reese caucasian  Homemaker  O Positive  ?6My jaw will lock up when eating, talking, and yawning.  !23" #17$% &'(It seemed to speed up in my late teens and then slowed down in my early twenties. We can't really associate anything specific causing the rate of proggresion to speed up or slow down~ )?*+,-./Somewhat Successful01234 578I had the surgery as a temporary solution when I was 13 years old. They suggested that I wait until adulthood before having a more permanent procedure. At 21 I found a group of docters in my area to perform reconstructive surgery, however my insurance denZ9??@?@??@?@@???FGHIJKLMSevereN$@"@O~ H@Angela Mary SherningEuropean local mushroom farm      colder than most - bothJaw locks when yawning !" #35$%& 'no(~ )4@*+ Unsuccessful,-./ Successful01234 5EYEC6:Eye operation - brought eye out enough to stop it watering7 Successful8Z9?????@?FGHIJKLMSevereN@@O~ H@Patrick Ward Hindman English and Teacher and writer     I have always had problems with the cold and my fingers. It takes a small amount of cold to produce painful digits. Along with this extreme discomfort comes swelling of the fingers and the loss of color. As they warm they may tingle and become red but stiWhat as list! I have non symtematic asthma which is a chronic condition. Also chronic is levo scoliosis with rotation of the vertebrae, mostly in the lumbar spine. My deceased mother was afflicted with rheumatoid arthritis. I have a history of arthritis,  !"#$%&'It seems to me the atrophy on the right side of my face did not happen at the same time the coup de sabre occurred. I think the facial atrophy, while much slower, happened about 15 years prior to the appearance of the coup de sabre. NOTE: Not being perfec ()*+,-./0123458Z9@?@?@?@@?@@@?@FGHIJKLMModerateN.@*@O~ I@ Ines Braham#i don't like this question student  A  Pos  it's incredible that you mention this: in fact: i've always sufferd from very very cold hands and the nails turn into a blue color: and people always retire their hands when they shake mijne!!  15 !"#$% &(~ )@*+Somewhat Successful,-./012345EXCISON6the doctors hed sliced a piece of my chin to make it seem more symmetrical and then in an other operation they've injected fat: but the results are not very concluding, and also i have to have another operation to reinject fat.7Somewhat Successful8Z9@?@@?FGHIJKLMModerateN@@O~ I@Sylvie Adele HalseyEnglish  School girl  O Positive  1(My mother suffers from Raynaud's diseasewnDaunes syndrome (hope the spelling is correct) Constant runny nose as an infant leading to removal of adenoids !"#$% &(~ )?*+Somewhat_successful,-./0123458Z9????@FGHIJKL MMildN@?O~ J@Andrea Bodenberg) German/French/Pennsylvania Dutch  Event Planner  A Negative  ZQusually my hands and feet are colder than anyone elses. especially in the summer.jaw was too small for my teeth. had to have braces because of buck teeth and many teeth pulled because my jaw was too small for all my teeth. even had my lower wisdom teeth out at the age of seven.fourteen !{the doctor that i have been seeing said that the disease's course usually runs about ten years. mine, however, took twelve."#$% &(~ )@*+Somewhat Successful,-./01 Successful2345JAW BONWw6nthe second surgery was to shave down my jaw bone (actually my rib) because it hadn't rounded off within a year7 Successful8Z9?@??????FGHIJKL MMildN@@O~ K@Nicholas RossyLebaneseLebanese Student     Just to let you know, I am filling this in for my 14 year old son, Nicholas. He was fortunate in that the coup de sabre seemed to stop on its own. He is undergoing treatment to repair the damage thru a series of fat injections, and with a cream to remove  10 !"#$% &(~ )@*+Somewhat Successful,-./01234 578Depending on this last injection, the doctor may remove some additional fat and inject more, as he is not convinced artificial injections will be more successfu.Z9FGHIJKLM Very MildNO~ K@ Ann DundonBRITISH ADMINISTRATOR/SALES  A   YEARS AGO I NOTICED MY HANDS WOULD WRINKLE UP LIKE VERY OLD HANDS THEN GO NORMAL WHEN I WAS YOUNGER. MY FINGERS ACHE SOMETIMES AND YES HAVE FELT COLD OFF AND ON EVEN IN THE SUMMER. I HAVE ALSO EXPERIENCE NUMBNESS IN THE HANDSI HAVE ALWAYS HAD THE JAW PROBLEM. MY PLASTIC SURGEON HAD SAID THE JAW IS NOT CONNECTED AT ALL. I KNOW IT IS. IT CAN BE VERY PAINFUL AND WORSE WHEN I AM STRESSED OUT. I CLENCH MY TEETH A LOT THIS DOES NOT HELP. THE INSIDE OF MY MOUTH IS DIFFERENT FROM THEEYES, STOMACH, PAINFUL JOINTS, BACK PROBLEMS, HEADACHES, NECK PROBLEMS, DEPRESSION (ALL IN THE MIND OF COURSE, ACCORDING TO THE DOCTORS). !"# NOT REALLY$% &'(MY ATROPHY SEEMED TO HAVE STOPPED BEFORE I HAD ANY OPERATIONS. (BEFORE 37 YEARS OF AGE) AFTER THE 3RD OPERATION THE ATROPHY CAME BACK, THIS TIME AROUND THE EYE SOCKET, TEMPLE,MOUTH AND ITS SEEMS LIKE THE SIDE OF MY HEAD AS WELL. I AM NOW 44 AND HAVING WOR~ )@*+,-./Somewhat Successful01234 578AFTER HAVING THE OPERATIONS I AM SOMEWHAT MISTIFIED AS TO WHETHER WHAT PAIN IS DUE TO THE PROCEEDURE OR THE ONGOING ATROPHY. I STILL HAVE A LOT OF PAIN IN THE FACE. I DO NOT KNOW IF THE ATROPHY IS ACTUALLY EATING THE MUSCLE IMPLANT UNDERNEATH AS THE AFFECZ9@?@@??@?@??FGHIJKLM Very SevereN&@@O~ L@Deborah Mitchell;2Australia - Irish, Welsh, English, French, Spanish Public Servant  B Positive  Quite severe spasms from 12 to 40+ - haven't had one for a while now (I am 46). Mouth used to snap shut with no warning - I often bit the inside of my cheek or tongue - very painful 'knotted muscle' at temple on my affected side - and I couldn't open my mI have small cysts - forearm, palm, and abdomen - about 5 all up. Doctor said they were nothing to worry about. After a recent health check at my work - I was referred to my doctor as my cholesterol was so low it didnt register on the machine. Doctor orgaAbout 30 !" #No$% &(~ )@*+Somewhat Successful,-./Somewhat Successful0123458Z9?@?????FGHIJKLMSevereN@?O~ L@Missy Thompsonamerican/white  pharmacist  A Positive  The eye on my affected side has been irritated for the last 2 months. I have been to 2 eye doctors and neither has been able to find anything wrong.I don't remember !" #32$@%&SURGERY'I had my first reconstructive surgery on my forehead then became pregnant 3 months later so I am not sure which was the reason for the speed-up. I was also pregnant at 18 but did not notice any change at that time.(~ )?*+,-./01Somewhat Successful23458Z9??@?@??@@???FGHIJKLMModerateN&@@O~ M@Laurene StannersUnited Kingdom origin2 )Intelligence Operator - Canadian Military  A Positive  I'm always cold, more so than just my hands. It has to be nice and hot for me to be comfortable. It is not just that I feel cold, I am cold to the touch. My fingers always go a waxy yellow/white when they are cold.I've never been diagnosed with immflammatory bowel disease as such, but I've had a problem since birth with my bowels. Most of my childhood I had constipation problems so much so that my parents had to physically help me go to the bathroom when I was a ch+"I believe it stopped about age 30. !"#Between 25 - 27$%&'xIt may have been because of weight training as I lost a lot of body fat at that time, and thus it became more noticeable(~ )@*+ Unsuccessful,-./01Somewhat Successful2345 ORBITAL PROPS6Three orbital props were inserted and then removed as they caused double vision. My left eye is no longer propped up yet I now have double vision. It was extremely unsuccessful, and only caused more problems. Carved off some of left lower jaw bone. It was7 Unsuccessful8I was suppose to have some ear carilege used to build up the inside of my left nostril so that I could actually get better oxyen intake, but it was never done. After the other disasterous surgery, I've never been keen for another surgeon to touch me.Z9?@?@????@?FGHIJKLMSevereN&@@O~ M@ Jason Subt/&Finnish-from mother Syrian-from father Half syrianQ HRemodel Houses and attending college, in hopes of an architecture degree  A Positive    13 !I wasn't taking part in any treatment because at the time there was none known. At least according to the doctors at the Mayo clinic in Houston Texas"#$%&)*+,-./0123458Z9???FGHIJKL MMildN@?O~ O@ Nicola WyattWhite  Housewife  A Negative   !maybe about 16 years old /!&Maybe the contraceptibe combined pill?" #26$?%&'After childbirth possibly when hormones are settling back into routine. When not on the pill. Noticed a dentation in my cheek bone area so went back on pill (and now fingers crossed) seems to have stopped.(At times of stress ie bereavement, house move, I experience pain in the areas affected on my l.h side of face. Could this be a trigger?)*+,-./0123458Z9@@@?@?FGHIJKLMModerateN$@@O~ @P@Amber Lekay Covinwhite - caucasion being a 4 year old kid  A Negative    !yI can not tell at this point what Amber's atrophy is doing. I do not see any visible differences than when she was three."#$%&)*+,-./0123458Z9FGHIJKL MMildNO~ P@ Karen Feutz-$1/2 Hungarian, 1/4 Irish, 1/4 German Administrative Asst     When I lived in the Midwestern portion of the U.S., Chicago, I always had cold hands and feet. I live in Arizona now and, at my age of 52, NOTHING is cold. Ha HaSometimes, it seems like the left-side of my face/jaw gets "stuck" i.e. if I yawn or when I chew something hard, it feels like it sticks. But I've never been unable to fully open or close my mouth.I have not been diagnosed but I think I have fibromyalgia. Everyday, my bones and my muscles ache. I have quite a bit of pain in the back of my neck, my wrists, my knees, my elbows; all the joints. I was tested for rheumatoid arthritis several years ago b Late teens 5!,Just seemed to stop as quickly as it started"#$% &'(It seems that the onset was at about age 9 and it stopped by age 16 or so. I started having surgery at age 14 so I don't know if that stopped the progress.~ )4@*+ Unsuccessful,- Successful./ Unsuccessful01 Unsuccessful23456Had silicone injections with a silicone implant to take the place of the unsuccessful bone implat for left cheekbone. Silicone implant still in place and good.7 Successful8I had a series of silicone injections in 1982 consisting of between 50 - 100 injections each during 6 separate treatment dates. Initially I was elated at the results. I looked the closest to normal that I ever did. Now, I have a slight concave spot on lefZ9????????FGHIJKLMSevereN@@ODGl9#YgR*k`" !R PT0!P"P#P$P%P&P'P(P)P*P+P,P-P.P/P0P1P2P3Pw4P5P6P 7Pw8P9PG:PT0;Pw <Pw=P]>P?PT0  ~ Q@     Dianne Lennox  New Zealander  Nurse O Negative              t kThey seem colder than most people's, my feet suffer from the same problem. No colour changes have been seen  f ]I do have diverticulitis. Apart from one acute attack, it has not really caused any problems.  13-14  ! " # $ % &) * + , - . / 0 1 2 3 4 58Z 9???@F G H I J K L MModerate N@O!!~ !@Q@!!!! Robert Clarke'!Born England, Parents Jamaican!African American-! $Financial Planner/Investment Advisor !  ! ! !!!!!!!!!!!!!!/!&I have muscle spasms from time to time!!!! !!!"!#!$!% !&(~ !)@!*!+!,!-!.!/Somewhat Successful!0!1Somewhat Successful!2!3!4!58Z!9?@?@@@??@F!G!H!I!J!K!L!MSevere!N@@O""~ "R@""""Donn CammarataS"JHalf Italian, Irish,English, scottish,Dutch...A tiny bit of American india" " " """""""""""""I have had some bowel problems. Mainly soft stools and I used to have alot of urgent diarhea before changing my eating habits. I had a colonoscopy and the doctor said everything looked fine. As far as the eyes, I have alot of skin problems, mainly in the "g"^Only the appearence of my chin now.............it is about a 1/4 inch higher on the left side."Segmental nephritis as a teenager. Tonsilectomy as a child. Inguinal Hernia surgury within the last yr and a half. I fell on the back of my head as a child, suffered a concusion""" "!"""#"$"%"&)"*"+","-"."/"0"1"2"3"4 "57F"8=I was recently diagnosed and have not looked into surgery yetZ"9??@?@????????F"G"H"I"J"K"L "MMild"N @@O##~ #R@#### Corey Lemoine&#french- Canadian European Jew## student # 0# Positive# # ############## ## #9# P#!Gpossibly methotrexate injections ??? don't know if it would have anyway#" ##7#$#%#&)#*#+#,#-#.#/#0#1#2#3#4#58Z#9@F#G#H#I#J#K#L#MSevere#N@O$$~ $R@$$$$Diane$white$$ stay at home mom $ 0$ $ $ $$$$$$$$$$$$$For years I have noticed that my hands were always cold and would kind of look blue or purplish as well as certain parts of my face and lips when it was cold out. My one friend used to call me a smurf.$$$I have spine scoliosis,my left eye is slightly crossed but can control it(lazy eye) My vision in the left is 20/100 my right is 20/20 ans slightly far sighted. I don't have eyelashes on the bottom of my right eye.$ $17$ $!$"$#$$$% $&(~ $)?$*$+Somewhat Successful$,$-$.$/$0$1$2$3$4 $57$8I had fat injected in my face taken from my stomach. It was fairly successful although only about 15% stayed and the rest was absorbed. I was going to have reconstructive sergury but found out I was pregnant and decided to forget it.I did have collegen inZ$9@??@?????@F$G$H$I$J$K$L $MMild$N"@@O%%~ %S@%%%% Jodi Quelle%White%% Court Reporter %  % % %%%%%%%%%%%%%%%Currently, my jaw is constantly aching. I often open and shut my mouth just to relieve the tightness. As far as "lock jaw", only when I was 16 (1986) did I have an episode of something similar. I had a terribly high fever and was very sick and my jaw just%Ever since birth, I was constantly ill with tonsillitis and colds, often losing my voice for all of winter. Finally, in 1995, I had my tonsils removed and have been fine since. In 1997, I went to the doctor for numbness in my feet. They had scheduled me f%%% %!%"%#%$%% %&'%(Smoking seems to exacerbate the problems and sensations. I quite smoking and may smoke just one occasionally when stressed. I run faithfully and lift weights and do toning exercises with some Yoga and sports. That seems to help a great deal as far as the ~ %)@%*%+%,%-%.%/%0%1%2%3%4%5%6My operations were unrelated to this disease. I just found out about this disease only 22 days ago and did not realize there were even courses of therapy, treatment or surgical procedures available. I have just begun my research regarding this. %78Z%9?@@???@?F%G%H%I%J%K%L %MMild%N&@?O&&~ &@S@&&&&Michel Laetitia&francaise (europeenne)&&  infirmiere & A& Positive& & &&&&&&&&&&&&I&@my fingers are becoming white (sometimes red) when its very cold& &&&& &!&" &#30&$&%&&STRESSC&':the stress (I was doing examens when it comes on the face) &()&*&+&,&-&.&/&0&1&2&3&4&58Z&9@@?@???F&G&H&I&J&K&L&MSevere&N$@@O''~ 'S@'''#'Madeleine de Rauville-RaalF'=White South African (English mother and South African father)'.' %Advertising / Full time mother of two ' O' Negative' ' '''''''''''''''When my PRS was at its worst (in and around 1987 when I was 20 years of age), I would have muscle spasms/cramps in my jaw. My jaw would lock in a terribly painful muscular spasm (the muscles along the jaw and the whole cheek area would seem to lock/knot iA'8No - nothing else - otherwise perfectly healthy and well'*'!28 (10 years after it had started' '!'"5'#,No, but it was at its worst from 1987 - 1990'$'% '&'f'(]No - to me it just had to run its natural course. Nothing helped speed it up or slow it down.~ ')?'*'+ Unsuccessful','-'.'/'0'1'2'3'4'5 RESTYLANE'6It's not surgical but a procedure (x3) whereby restylane and perlane products have been injected into the affected / depressed area under local anaesthetic. I think this has been good for me as mine is only a soft tissue problem ie bone is fine. We don't '7 Successful'8Z'9@??@@???@?@F'G'H'I'J'K'L'MModerate'N$@@O((~ (S@(((( Kyla Meyer!(German, Turkish, African(( student (  ( ( ((((((((((((O(FI am thin and have always been told it is from inefficient circulation(O(Fnot exactly but ove the years I am able to open my mouth less and less,(#anorexia nervosa, sinus infections,((( (!(" (#25($(%(&STRESS|('sI don't know if it's related but the syptoms seemed to speed up during a time of unrelated extreme emotional stress (()(*(+(,(-(.(/(0(1(2(3(4(58Z(9@?@?@???@F(G(H(I(J(K(L(M Very Mild(N"@@O))~ )@T@))))Adrienne Wilson!)New Zealand Maori/Pakeha)Maori) University student ) A) Negative) ) ))))))))))))o)fIm very sensitive to the cold, my hands sometimes turn white/blue and if i get really cold i feel sick) )) )15) )!)")#)$)%)&))*)+),)-).)/)0)1)2)3)4)58Z)9@?@&@??@?F)G)H)I)J)K)L)MModerate)N@,@O**~ *T@**** Mary Toledo*German**  IS-Technical *  * * **************.*%I do have spasms sometimes in my jaw.** *5-6* *!*"**#!It started very aggressively at 3*$*% *&(~ *)4@***+Somewhat Successful*,*- Unsuccessful*.*/Somewhat Successful*0*1 Successful*2*3*4*5COSMETIC*6I have had my nose straightened with the use of ear cartilege. Had my lower eyelid thickened a bit with some of the skin from my upper eyelid. Had my upper lip thickened with grafting from the lining of my mouth. I have probably forgotten some of them.*7Somewhat Successful*8Z*9?????F*G*H*I*J*K*L*M Very Severe*N@?O++~ +U@++++ Hyunjin Lee+Korean+Korean+  researcher + A+ Positive+ + ++++++++++++++ ++ +24+ +!+" +#26+$+%+&STRESS6+'-I think.. Fatigue and stress make it speed up+(~ +)?+*++Somewhat Successful+,+-+.+/+0+1+2+3+4+58Z+9??@?@@???F+G+H+I+J+K+L+MSevere+N"@@O,,~ ,@U@,,,,Petra R. Medina,Spanish-American,!, Administrative Assistant , B, , , ,,,,,,,,,,,,,, ,, ,10?, ,!,",#,$,%,&q,'hI really didn't pay attention to how long it took, how old I was, or whether it stopped or speeded up???,(~ ,)@,*,+,,,-Somewhat Successful,.,/,0,1,2,3,4 ,5FOAM,6piece of foam shaped to fit over my right side by my ear and jawline at age 18 in addition to fatty tissue taken from my stomach to fill in around nose and cheek-bone down,7 Unsuccessful,8eventually the "piece of foam" has shrunk and broken up and I think is still in by my jaw someplace; it seems to be hanging in the throat area immediately below the jaw kind of in a lump. I guess I just forget it's there and have never thought about havinZ,9??@?????F,G,H,I,J,K,L,MSevere,N @?O--~ -U@----Craig Mitchell -- Software Engineer -  - - -------------- -- -16- -!-"-#-$-% -&(~ -)@-*-+Somewhat Successful-,---.-/-0-1-2-3-4-5s-6jHad excesive fat after graft (expecting some absorption) and went for a type of lipo to remove excess fat.-7Somewhat Successful-8Z-9?????@F-G-H-I-J-K-L-MModerate-N@@O..~ .V@....Rose M. Goodman.Germany / Irish.&. sales - construction industry .  . . ...............Sometimes it tightens up so much in the afflicted area that you can see the tension and it hurts!I have to try and stretch it just like a cramp in any other muscle.../.&based on photos, it was active 5 years. .!.".#.$.% .&'.(Was a healthy child - first noticed at age 13 and it progressed so slowly that as first the damage was not noticible to my family. Per photos, seemed to have stopped at age 18~ .)@.*.+ Successful.,.-.../.0.1.2.3.4.5LASER.6Surface laser to smooth out the deep furrows. It did make a difference, however, the part where the muscle still shows (chin closest to the center)is noticible when I move my mouth. In most people this area has "padding" but mine does not so you see the m.7Somewhat Successful.8Z.9???F.G.H.I.J.K.L .MMild.N@O//~ /V@////Beth McAllister/white// child /  / / ///////////////[/RPsoriasis (on scalp). That's what we thought caused her bald spot a long time ago./,/#we think it is stopping now - at 10/ /!/"N/#ELast year at age 9 was a dramatic year of development of this disease/$/% /&'/(Just a growth spurt?/)/*/+/,/-/.///0/1/2/3/4/58Z/9?????F/G/H/I/J/K/L/MModerate/N@?O00~ 0V@0000D.Garvin!0scottish,english descent00  hairstylis 0 A0 0 0 00000000000000 00 0280 z0!qi had a dermis graph inserted into my cheek and chin. i have not noticed anything more and that was 14 years ago.0"T0#Ki had 2 pregnancies between age 23 and 26 which is when it was at its worse0$0%0&0'it could have been the pregnancies or maybe it was the timing of having it for so long and it had just about burned itself out i am not sure.0(~ 0)@0*0+ Unsuccessful0,0- Unsuccessful0.0/000102030405k06bi had a silicone prothesis inserted but i had it removed later because it looked and felt strange.07 Unsuccessful08Z09???@?F0G0H0I0J0K0L 0MMild0N@O11~ 1W@1111 Mary E. Lydon1 Mostly Irish1 1 cook 1 O1 1 1 1111111111111The first time I diagnosed way back in 1976, the plastic surgeon had me see an opthalmologist, he told me that I had debris in my right eye. He gave me steroid drops, never saw him again. When I was 30, 11 years later, I needed to wear glasses, my eye doc1X1OOccasionally the muscles under my jaw will cramp, it is just a momentary thing.x1oI had two grand mal seizures when I was 44. I mistakenly called them petit mal on the first part of the survey.111 q1!hThe atrophy seemed to occur almost overnight when I was 15, it has not changed significantly since then.1"1#1$1% 1&(~ 1)?1*1+1,1- Successful1.1/10111213141516I recieved 11cc of liquid silicone in my cheek and chin in 1974. Dr. Joseph Murray of Peter Bent Brigham Hospital in Boston MA (now known as Brigham and Womens Hospital), was participating in a goverment sanctioned test on silicone injections. He was the 17 Successful18Z19?@@???F1G1H1I1J1K1L 1MMild1N@@O22~ 2@W@2222Siomara M. Laguna2Central American2"2 Preschool Teacher/Student 2  2 2 222222222222D2;My hands are always cold. They are never clammy, just cold.2 2222 i2!`I had reconstructive surgery, so I am not sure if it ever slowed down because I have an implant.2" 2#192$2% 2&(~ 2) @2*2+Somewhat Successful2,2-2.2/2021Somewhat Successful222324 25EYE26I have had cranial reconstruction and around the orbit of the eye. The first surgery was not successful because the orbit made my eye shift and made my eye look worse than before. I have also had to have eyelid surgery because there was too much scar tiss27 Unsuccessful28Z29?????@??F2G2H2I2J2K2L2MSevere2N @?O33~ 3W@3333Serene Oh Hwei Fern3CHINESE3Chinese3 NURSE 3 B3 Positive3 3 33333333333363-HAVE SWEATY PALMS(NOT SEVERE), AND COLD HANDS33FEEL TIGHTNESS OF THE LEFT JAW. SOMETIMES WHEN I OPEN MY MOUTH, I CAN FEEL THE JAW MOVING UP AND DOWN (MECHANICALLY). COULD NOT OPEN MY MOUTH BUT RELIEVE AFTER TAKING PHENYTOIN AND ANAREX3I'm Serene Oh from Singapore. I think I've missed out something which may or may not be relevant. I had a lipoma removed in late 1997. It's located near my right scapular. Guess that's about all. Really hope to hear from you soon.333 3!3"3#3$3% 3&'3(I DON'T SEE THE SPEEDING OR STOPPING, BUT I OBSERVED THAT I'VE INCREASING HEADACHE AND TIGHTNESS OF MY JAW WHEN I'M STRESS, OR EMOTIONALLY CHARGED, OR SMILE/LAUGH EXCESSIVELY3)3*3+3,3-3.3/3031323334358Z39@????@F3G3H3I3J3K3L 3MMild3N@@O44~ 4W@4444 Natalie Bru4Hispanic44 Sales Associate 4  4 4 44444444444444 4444 4!4"4#4$4% 4&(~ 4)?4*4+ Unsuccessful4,4-4.4/4041 Unsuccessful424344 45647 UnsuccessfulY48PThese type of surgery only lasted a couple of months, now my symptoms are worse.Z49@????@????F4G4H4I4J4K4L4MModerate4N@@O55~ 5X@5555 Mary Camp5 Caucasian535 *Stay at home Mother, formally a journalist5 5 Positive5 5 555555555555555Sometimes I find it difficult to chew on the left side. This is not due to pain or stiffness but just a general lack of strength/mobility.55513 or 145 75!.Onset of menstruation and reaching full growth5"5#late 20s5$>5%5&5'I believe pregnancy reactivated the atrophy, but am not absolutely certain of that, because the area affected (chin) had fat grafts in the 1970s and it has also occurred to me that what I am seeing is a deterioration of those grafts and a reverting back t5(~ 5)@5*5+Somewhat Successful5,5- Unsuccessful5.5/5051525354558Z59?????F5G5H5I5J5K5L5MSevere5N@@O66~ 6@X@6666 Diana Mann6Cockney66 Garden Designer 6 A6 Positive6 6 66666666666666#6Can't open mouth very wide6Proper Iritis - goes to Moorfield. Depression after parents died (not to do with face). Gallbladder, Hysterectomy, general ill health (seems unrelated)6 6116 6!6"6#6$6% 6&'6(Didn't notice anything~ 6)9@6*6+Somewhat Successful6,6-6.6/Somewhat Successful60616263646566Right ear stuck out (pinned back). Tried to alter shape of eye in one operation. Arm to face pedicle in 20's. More embarassed by arm and abdominal scars. Rhinoplasty x 3 678Z69??@@?F6G6H6I6J6K6L6MSevere6N@@O77~ 7X@7777Patricia Del Mercado7 caucasian77 Registered Nurse 7 A7 Positive7 7 777777777777777SLight malocclusionU7LPolymyositis resulting from an anti-depressant "Serzone" Anxiety. Scoliosis.777 7!7"7#7$7% 7&(~ 7)@7*7+Somewhat Successful7,7-7.7/707172737475GORE TEX,76#gore-tex implant and cheek implants77Somewhat Successful78Z79@?@@@@??@???F7G7H7I7J7K7L7MModerate7N,@@O88~ 8Y@8888Kathy S. McCormick8Irish American8&8 Nuclear Medicine Technologist8 8 Positive8 8 8888888888888I tend to be cold all over. I have plenty of "padding" (I'm overweight), but I still seem to always be cold. Occasionally when I get extremely cold extremities, my hands seem to appear white88I've had TMJ. On occasions when I yawn, my jaw would lock open. I have since learned to yawn "off center" to avoid having my jaw lock.8I have very severe allergies to mold, fungus, dust, smoke, pollen, grass and trees - - - mostly mother nature. I've been treated with oral meds (currently 10mg QD Zyrtec and started taking allergy shot 1 year ago. My allergist, Dr. Gailen Marshall, said h888 8!8"8#8$8% 8&'8(It seems as though I did not develop PRS until I was about 40 to 41 years old. It seems to have progressed (very slowly) since then and since it is slow, I can not tell if the Plaquenil has made any difference.8)8*8+8,8-8.8/8081828384858Z89?F8G8H8I8J8K8L 8MMild8N?O99~ 9@9999 Rita Bietry+9"American born, parents from Poland99 Medical office nurse 9 B9 Positive9 9 999999999999L9Cfingers and toes become cold and numb quite easily when not active.99The jaw will become lodged in a certain position. This does not happen often but it does happen suddenly. I have learned to just relax myself and my jaw and it will relax the muscles.9i suffer from headaches both sinus, tension and migraine. It seems I have a headache of some degree every day. Most of them are treatable with sinus medicine and motrin. Occassionaly the migraine needs Medrin.I also have a sensitivity to flickering lights99 40 years old9 9!9"9# 32years old9$?9%9&9'zIt started after my second pregnancy. I noticed a darking spot on my right eye develop before the facial changes occurred.9(~ 9)@9*9+Somewhat Successful9,9-9.9/90919293949596I had one fat implant operation that was somewhat successful except that the implant 'took' a little off the mark. I have also had two auto fat injections that did not last very long at all. The fat was reabsorbed quite rapidly. 978Z99??@?@?@???@@?F9G9H9I9J9K9L9MModerate9N&@ @O::~ :@::::Elizabeth Taylor:english/scottish:: customer service rep : B: Negative: : :::::::::::::: :::about 6 or 7 i think: :!:" :#No:$:% :&(~ :)6@:*:+ Unsuccessful:,:-:.:/ Unsuccessful:0:1 Successful:2:3:4:58Z:9@@??@?@?@?@??@F:G:H:I:J:K:L:MSevere:N*@"@O;;~ ;@;;;;Tammie D. Stammers; caucasian ;  ; B; Negative; ; ;;;;;;;;;;;;;; ;;;; ;!;";# early 20's;$;% ;&(~ ;)@;*;+Somewhat Successful;,;-;.;/ Successful;0;1;2;3;4;58Z;9??@??@??@?F;G;H;I;J;K;L;MModerate;N@@O<<~ <@<<<< Nicole Tully<Irish, Scottish<< student <  < < <<<<<<<<<<<<<<<9<0Severe sinus infections on affected side of face<<< <!<"<#<$<%<&)<*<+<,<-<.</<0<1<2<3<4<58Z<9???@F<G<H<I<J<K<L <MMild<N@O==~ =@==== Susan EmeryJ=ACaucasian (both parents & all grandparents etc. are from England)== Call Centre manager= = Negative= = =============My toes often loose their feeling and go purple or extremely white (like there is no blood getting to them). Both my GP and accupuncturist said I have Raynauds phenomenon / disease in a mild form (I believe this is the loss of circulation to extremities. =o=fI get really sore spots at the angel my jaw opens and closes. Sometimes so sore I can't even touch it.== =early 30's. I am now 37= =!="=#=$=%=&)=*=+=,=-=.=/=0=1=2=3=4=5OP ON GOOD SIDE=6I had a plastic surgeon who felt it was safer and more feasible to make the healthy side look more similar to the unhealthy side. He did a complete facelift and took fat away from the healthy eye lid to give more of an even appearance. So it was a cut fro=7Somewhat Successful=8I still have a fairly flat dent on my left cheek where all I see is bone. Skin is very thin on that cheek bone. Left eye is more sunken than right eye.Z=9@@@?@@?F=G=H=I=J=K=L =MMild=N0@?O>>~ > @>>>> Clare Flaxman>english>>  bookkeeper >  > > >>>>>>>>>>>>>>u>lMy mouth doesn't open very far .... the jaw doesn't stretch much. also my lower right teeth are falling out.p>gI am on medicine for depression. Last year my 46 year old husband died. we were married for two months.>>about 35 perhaps.> >!>" >#32>$>>%>&0>''being pregnant I feel really sped it up>(when I'm tired it is more obvious. When I[m very stressed it seems to speed up. I think it went active again last year when my husband died.>)>*>+>,>->.>/>0>1>2>3>4>58Z>9@@@???@??F>G>H>I>J>K>L>MSevere>N&@@O??~ ?"@???? Angela Bright?white? ? RN ? A? Positive? ? ?????????????? ?? ?28? ?!?"?#?$?% ?&(~ ?)@?*?+ Unsuccessful?,?-?.?/?0?1?2?3?4?58Z?9@??????F?G?H?I?J?K?L?MModerate?N @OD4l._ 4'ga(J=u@PT0APBPCPDPEPFPGPHPIPJPKPLPMPNPOPPPQPRPSPwTPUPVP WPwXPYPGZPT0[Pw \Pw]P]^P_PT0@@~ @$@@@@@ Manuel Puebla@Latin@Hispanic@ Student @ A@ Positive@ @ @@@@@@@@@@@@@@@Sometimes my jaw is locked and it's a lot of strain as I feel there is some kind of cramp in the muscles of my neck and below my toungue. Usually happens when I'm nervous or in a stress situation; also in cold environments.G@>When I was a toddler I had bronquitis (is it spelt that way?).@@@7No, I am not even sure if it stopped but I guess it did@ @!The athrophy became more and more evident as the rest of my body developed normally, but as far as I'm concerned it stopped in my early teens (about 14 years old).@"@#@$@%@&)@*@+@,@-@.@/@0@1@2@3@4@58Z@9??@?@@?@?F@G@H@I@J@K@L@MSevere@N$@@OAA~ A&@AAAA Marilyn NealA CaucasianAA  Housewife A OA PositiveA A AAAAAAAAAAAAAAAI have muscle spasms in my Romberg's affected jaw muscle. When I was diagnosed at age 16, the spasms were quite severe. As I have grown older, the spasms are still there but not to the same degree. Now I get quick little spasms that cause me to bite the iAI have tissue loss on my side above my waist on the Rombergs affected side. It is a deep crease there. It has not caused me any medical problems that I know of.A*A!I feel it stopped in my late 20'sA A!My atrophy took most of the tissue on my right side cheek and chin. I also have bone loss in my forehead and temple areas and around my eye. My atrophy was a very slow process over many years. It started around the age of 9 and had burned itself out in myA"A#A$A% A&(~ A)@A*A+ SuccessfulA,A-A.A/ SuccessfulA0A1 SuccessfulA2A3A4 A57RA8II do not believe it is possible for surgeons to give us perfect symmetry.ZA9@?@@?@@@??FAGAHAIAJAKALAM Very SevereAN(@@OBB~ B*@BBBBAndrea M. RodriguezBwhiteB8B /Production Manager for Screen Printing Division B  B B BBBBBBBBBBBB_BVI think it's because I'm a smoker. My dermatologist does not think that it's Raynauds.BB~Had TMJ for over 3 years now. My dentist, orthodontist and oral surgeon do not recommend anything other than wearing a splint.BLet's see, where do I start. Allergies is first and foremost. I have seen and opthamologist because of a pseudo tumor behind my left eye. (The affected side) I also had a problem earlier this year due to many headaches. For the most part, I get sick reallB B17B B!B"B# around 19B$B%B&STRESSSB'JPossibly stress, I had just left college and took on a 40 hour a week job. B()B*B+B,B-B.B/B0B1B2B3B4B58ZB9????@??@?@??FBGBHBIBJBKBLBMSevereBN @@OCC~ C,@CCCCJo-Ann D'AngeloCItalian AmericanC.C %International Compensation Specialist C  C C CCCCCCCCCCCCCCCCI did see a US recognized immunologist who had a interest in Parry Rombergs and she did extensive blood work. She explained that my blood work showed signs of immunologic disorders but not enough that I would be fully diagnosed with one. I usually have a C C24C C!C" C#21C$>C%C&[C'RIt may have gotten worse during a pregnancy but I honestly cannot say for certain. C()C*C+C,C-Somewhat SuccessfulC.C/C0C1C2C3C4C58ZC9@??FCGCHCICJCKCLCMModerateCN@ODD~ D.@DDDD Pam UnReinDWhiteDD Legal Secretary D OD PositiveD D DDDDDDDDDDDDDI was diagnoised with Raynauds phen. about one year and extreme tiredness before the fat on the right side of my face almost totally disappeared.DDI would get muscle spasms under the right jaw since I was 16 years old and I still have them on occasion, I am 39. When the muscle would relax the jaw would not feel so tight, it would come on when yawning widely or sometimes chewing foods.DAt age 8 I had an ulcer, 11-colitis, at 15-I had a fatty tumor (benign) removed from the left side of my chin, almost immediately after that surgery the rt. side of my chin did not look right, I went through 2 more surgeries from a plastic surgeon at age DDnot really, because the face changes so much from intake of salt to hormores that unless it is a major change it is hard to tellD D!D" D#23D$?D%D&D'after the birth of my second child and I had lost the birth weight, the fat on rt. side of face disappeared also, I am 5-4 and weight 98 lbs after the birth of my sons I weight maybe 95 lbs.D(not that I know ofD)D*D+ SuccessfulD,D-D.D/D0D1D2D3D4D5D6I do think that at 19 when I had all my wisdom teeth taken out by inpatient surgery I did notice a change in the rt. side of face.D7 SuccessfulD8ZD9?@??@@??FDGDHDIDJDKDLDMModerateDN&@?OEE~ E0@EEEE Silvia MolerEHispanicEHispanicE Microbiologist E OE NegativeE E EEEEEEEEEEEEE{Sometimes my hands and feet get very cold. At night I have to sleep with socks so my feet don't get cold and become purple.EEFE=Excesive swetting from my armpits. Back problems (scoliosis).EEE E!E"E#E$E% E&(~ E)@E*E+Somewhat SuccessfulE,E-E.E/E0E1 UnsuccessfulE2E3E4E5ALLODERMSE6JAlloderm in 1999. It helped a lot and the procedure was not to complicatedE7 SuccessfulE8ZE9@@@????????FEGEHEIEJEKELEMModerateEN$@@OFF~ F1@FFFF Tom SabelFWhiteFF  Social worker F OF PositiveF F FFFFFFFFFFFFFI have the scleroderma from Rombergs on the left side of my face. I have been diagnosed with colitus, depression,and possibly thyroid trouble when Iwas very youngFFI use to have the spaams where the area under my jaw on the affected side of my face would get knotted up and I had trouble opening my mouth. This problem has disappeared since I began to take Celexa and Buspar.FFF38-39 I think.F F!F"F#F$F%F&)F*F+F,F-F.F/F0F1F2F3F4F58ZF9@??@?@??@???FFGFHFIFJFKFLFMModerateFN(@@OGG~ G2@GGGGSusan L. SpieseGgerman/english descentGG rural letter carrier G OG PositiveG G GGGGGGGGGGGGGGGCan't remember what the doctor called it but the joint is not right on the romberg's side of my face. It gets sore sometimes & I cannot fully open my mouth without painsGjfibro-cystic breast condition had 1/2 my thyroid removed due to tumor...needle biopsy showed hurthle cellsGG late 20'sG G!G"G#G$G%G&)G*G+G,G-G.G/G0G1G2G3G4G58ZG9@????????@FGGGHGIGJGKGL GMMildGN@@OHH~ H3@HHHHJane Valerie SandallQHHBritish (Irish/Scottish) caucasian (is that the correct spelling !!!???)HH Computer SystemsH H NegativeH H HHHHHHHHHHHHHHHH{miscarriages and premature birth of baby at 26 weeks which died after 9 days. i have not been successful at having childrenHH pre-teensH H!H"H#H$H% H&(~ H)?H*H+H,H- UnsuccessfulH.H/H0H1H2H3H4H5H6After a series of silicone injections over months, I had to have 1 operation to try to drain out silicone that was previously injected but did not stay in the Rombergs areas of face. It moved to areas which had softer tissue. the Rombergs areas had tougheH7 UnsuccessfulH8ZH9FHGHHHIHJHKHLHMModerateHNOII~ I@Y@IIII Julie BackeYIP1/4 Scottish & 1/4 Swedish - the rest is a Heinz 57 mix of welsh/german and moreII Corporate ParalegalI I NegativeI I IIIIIIIIIIIIIII`IWHave deveoped allergies in recent years. Sinus infections on left side. Bowel problems.III I!I"I#I$I%I&)I*I+I,I-I.I/I0I1I2I3I4I58ZI9??@?@???@?@FIGIHIIIJIKILIMModerateIN&@@OJJ~ J[@JJJ(JAnnette Marie (Halladay) Morris<J3French, Irish, Belguim, French Candain and AmericanJ2J )Sales Clerk and Full time college Student J AJ PositiveJ J JJJJJJJJJJJJJJ0J'The doctors have diagniosed me with TMJJJJ not sure,J J!J"J#J$J% J&(~ J)@J*J+ UnsuccessfulJ,J-J.J/J0J1J2J3J4J5RECONSTRUCTIVEJ6vthey put in plates, to build up the bone, one across the cheek (under the eye) and one across the jaw and on the chin.J7Somewhat SuccessfulJ8The lipo, that was inserted into the cheek to puff it out, didnt take in the frist surgery and became infected and drain out it after the second.ZJ9?@@@??@FJGJHJIJJJKJLJMModerateJN&@?OKK~ K@[@KKKK Teresa BurksNKEI have Scottish, English, German, Irish and Cherokee Indian ancestry.KK Insurance adjuster K OK PositiveK K KKKKKKKKKKKKKK KKKK GK!>I have alot of surgery, so I can't tell if it has slowed down.K"K#K$K% K&(~ K)1@K*K+Somewhat SuccessfulK,K-K.K/Somewhat SuccessfulK0K1K2K3K4 K57#K8It was an awful experienceZK9@@@@@@@?@@?FKGKHKIKJKKKLKM Very SevereKN(@(@OLL~ L[@LLLLLes BienkiewiczLPolishL5L ,ex Army officer (22 yrs); now public servant L AL PositiveL L LLLLLLLLLLLLLLLLHigh blood pressure.LLmid 20sL L!L"L#L$L% L&(~ L)@L*L+ SuccessfulL,L-Somewhat SuccessfulL.L/ SuccessfulL0L1L2L3L4 L56L7Somewhat SuccessfulL8ZL9???????FLGLHLILJLKLLLMSevereLN@@OMM~ M[@MMMMSean William PriceMwhite north americanMM denta lab technician M  M M MMMMMMMMMMMM8M/only when iget very cold legs, hands get purpleMGM>sometimes if i am chewing gum it locks up and also feel spasmsMMMM M!M"1M#(no,most damage was done in earlier yearsM$M%M&)M*M+M,M-M.M/M0M1M2M3M4 M57^M8Ui am thinking of micro-surgery, i have saw many people do very well with this surgeryZM9@?????????FMGMHMIMJMKMLMMModerateMN@@ONN~ N@\@NNNNKaren HamiltonN CaucasianNN Registered Nurse N BN PositiveN N NNNNNNNNNNNNNNNMy jaw does not open very far and if made to at the denist office then it is very painful and the pain will last for days. Chewing gum also can hurt my jawNI think I listed everything on the last page because I do not know what is relevant and what is not. I just wanted to say for the last question on rating my face. I rated it severebecause of what I looked like as a child. The surgeries have helped some anNNN N!Stopping the pain seems to help it some but I cannot really say that it has stopped or slowed down because the degeneration has been ocurring my whole life, even after the reconstructive surgery my face has always been doing this.N"-N#$as a toddler and around 29 years oldN$N%N&N'Yes pain seems to make it speed up. I was told as a child that I probably could not have children and so far I have never gotten pregnant.N(All I can think of is that when I was younger I did smoke some pot and I tried cocaine and it seemed to make it worse. I am embarrassed to admit this but I figure you should know all. But yet I do have to say that smoking the pot did help with the pain, b~ N)@N*N+Somewhat SuccessfulN,N-N.N/N0N1N2N3N4N5N6I had an inguinal hernia as a child but I do not think that was relevant to this. I did refuse the silicone injections as a child. I am glad now because of the ramifications it has had on others. I was also offered the bone graft but turned that down. I lN7N8I do not have health insurance right now and have not for years and the cost of the care I have received has been tremedous. I have been unable to work for several years due to the pain and yet so far I have not really found any doctor that has been of anZN9@@@?@?@@@?@@?FNGNHNINJNKNLNMSevereNN.@$@OOO~ O\@OOOOKathleen Clift'OMother- French / Father-GermanO6O -Owner/Vice President - Transportation Company O AO NegativeO O OOOOOOOOOOOOOOOMy jaw has locked peiodically since I was about 10 years old. I still can not open my mouth wide enough to eat apples or a hamburger. I had braces on my teeth from the time I was 12 until I was 14. This seemed to escalate the jaw problem. Several times myO}Xrays showed that part of the bone on the right side of my chin was missing when I was 16 years old. I have Stenosis - L4 L5.OOO O!O"O# 18 years oldO$O%O&STRESSuO'lStress seemed to make it speed up. I had 5 stressful pregnancies and started my own business. Lots of stressO(~ O)@O*O+Somewhat SuccessfulO,O- UnsuccessfulO.O/O0O1O2O3O4 O56O7 SuccessfulO8The silicone injections changed and damaged some of my features and the operations made me look better. The fat from the injections dissolved within 6 months. I am very lucky. Makeup covers up most of my faults. My PRS seems to be very mild compared to otZO9???@FOGOHOIOJOKOL OMMildON@?OPP~ P\@PPPP Nickie SnowP CaucasionPP TV News producer P  P P PPPPPPPPPPPPPPPAfter my first reconstructive surgery my jaw started to crack when I opened it too wide but is it better now. I only get lock jaw during times of stress.PI have patches of numbness all over my body--predominantly on the right side but a few little spots on the left side. I have one large chunck of numbness on my upper right thigh. In the areas of numbness, no body hair grows.P.P%I believed it stopped around 23 or 24P P!P"5P#,it rapidly sped up 18-22yrs and then stoppedP$P%P&STRESSP'I can't be sure, but I partied a lot in college and that's when the atrophy really began to become pronounced. I lost about 30 lbs and drank college levels (that's a lot) of alcohol. Some how I think that the alcohol and lack of sleep contributed to poor P(~ P)@P*P+Somewhat SuccessfulP,P-P.P/Somewhat SuccessfulP0P1Somewhat SuccessfulP2P3P4P58ZP9@@????FPGPHPIPJPKPLPMModeratePN@?OQQ~ Q]@QQQ5Q,Liz Taylor (from USA) - not elizabeth taylor,Q#swedish, scottish, egyptian, frenchQ?Q 6research coordinator, dietitian, exercise physiologist Q AQ NegativeQ Q QQQQQQQQQQQQ'Qin the winter only, cold handsQLQCused to spasm and stay locked, would have to wait and then pry openQQQQ Q!Q"Q#Q$Q% Q&'CQ(:i don't think it ever stopped with me, just keeps going on~ Q)?Q*Q+Somewhat SuccessfulQ,Q-Q.Q/Q0Q1Q2Q3Q4 Q57bQ8Yinitially the fat graft worked well but since the disease continued it ate up all the fatZQ9?@@?????@FQGQHQIQJQKQLQMSevereQN"@@ORR~ R@]@RRRRL. KellyR Irish/ GermanRR student R OR PositiveR R RRRRRRRRRRRRRR RRR 6-7 years oldR R!R"R#R$R%R&R'The Romberg's stopped or seemed to stop for about 5 years. But we are not sure beacause it is a very mild case and very slow moving. just before it restarted my daughter hit her chin a couple times by falling. She is a dancer. R()R*R+R,R-R.R/R0R1R2R3R4R58ZR9??FRGRHRIRJRKRLRM Very MildRN@OSS~ S]@SSSSDenise H.W. Eisenberg S!S student w/ part time job S AS PositiveS S SSSSSSSSSSSSSSSSAt one poit, i had been really stressed and uptight while in a fight with a family member and my right arm began to shake or spasm. It didnt last long. We went to a neurologist and he said in extreme cases that can happen to any one. But in any case we weS S16S S!S"S#S$S% S&(~ S)?S*S+Somewhat SuccessfulS,S-S.S/S0S1S2S3S4S5S6in the same surgery as the fat graph i had an implant put in. my mother and i arent sure exactly what it is called but it is artificail and the name of it has 3 letters and it starts with an "H".S7 SuccessfulS8today is January 15, you recently called me to finish this half of the survey. i had my 1st and only (so far) surgery on Oct24 or 25. i had a fat graph from my abdomen to my middle cheek and the implant implanted inmy upper cheek to replace my cheek bone.ZS9@??@????@?@FSGSHSISJSKSLSMModerateSN&@@OTT~ T^@TTTTAmanda BolingerTwhiteT#T certifed nursing assistant T AT T T TTTTTTTTTTTT.T%My hands get blotchy when there cold.T TT T11T T!T"T#T$T% T&(~ T)@T*T+T,T- UnsuccessfulT.T/T0T1 SuccessfulT2T3T4T52T6)I've had a silicone implant under my eye.T7 UnsuccessfulT8ZT9??@???FTGTHTITJTKTLTMSevereTN@OUU~ U@^@UUU2U)Kiara Higgins Mother Colleen doing surveyUaustralia and englishU U U UUUUUUUUUUUUUUUUCoeliac diseaseU U4U pU!gTreatment seems to have halted most of kiaras atrophy but as she is growing it is hard to tell how muchU"U#U$U% U&(~ U)?U*U+U,U-U.U/U0U1U2U3U4U58ZU9???FUGUHUIUJUKULUMSevereUN?@OVV~ V^@VVVVSylvia HajdukovicV SlovenianVV  housewife V OV PositiveV V VVVVVVVVVVVV!VHands and feet very coldV3V*Cant open wide extrodinary pain in the jaw*V!Right breast as mentioned earlierV V30V V!Electronic treatmentsV"V#V$AV%V&V'second pregnancyV(~ V)@V*V+ SuccessfulV,V-V.V/V0V1V2V3V4V5V6 tissue graftV7 SuccessfulV8ZV9?@???FVGVHVIVJVKVLVM Very SevereVN@?OWW~ W^@WWWW Kristi DavisWfrenchWW administrative W OW W W WWWWWWWWWWWWQWHMy hands (and usually my feet) are always cold, even when it's warm out.WWI get pain in my jaw.WWWW W!W"W#26-27?W$W%W&W'I answered no to most of the questions above, but I'm not sure if it has slowed down or actually stopped. Since it hit so quickly and deteriorated so fast, I'm not sure that it has stopped altogether.W(~ W)@W*W+W,W-W.W/W0W1W2W3W4W5W6I had a new type of implant put in. I'm afraid I don't remember the name of it right now. My doctor had a CT done of my skull, then created implants that he thought would fill the "holes" best.W7 UnsuccessfulW8ZW9@?@?@?????@???FWGWHWIWJWKWLWMSevereWN(@@OXX~ X_@XXXX Deepa JacobX christianXX Teacher X OX PositiveX X XXXXXXXXXXXXXXX2X)urinery infections and menstral disordersXXX X!X"X#X$X%X&)X*X+X,X-X.X/X0X1X2X3X4X58ZX9@@@?@@@??FXGXHXIXJXKXLXMModerateXN&@@OYY~ Y@_@YYYYVictoria NorrellYWhiteYY Helpline worker Y  Y Y YYYYYYYYYYYYYYoYfWhen I get stressed or tired I find I am unable to fully close my jaw. It hasn't happened for 6 monthsvYmI have (although now much improved) - suffered with a very low /weak immune system and always used to be illYYY Y!Y"Y#Y$Y% Y&(~ Y)@Y*Y+ UnsuccessfulY,Y-Y.Y/Somewhat SuccessfulY0Y1Y2Y3Y4Y5PLASTICGY6>Plastic graft to forehead to even out depression on right sideY7Somewhat SuccessfulY8ZY9?@@??@@@FYGYHYIYJYKYLYMModerateYN0@?OZZ~ Z_@ZZZZ Janet TaylorZWhiteZZ Contract Specialist Z AZ PositiveZ Z ZZZZZZZZZZZZ{ZrI have one very small, quarter size, patch of skin without pigment on my right elbow, but I have always had thatn.Z/Z&Once or twice I have had my jaws lock.ZZ Z35Z Z!Z"Z#Z$Z% Z&(~ Z)@Z*Z+Somewhat SuccessfulZ,Z-Z.Z/Z0Z1Z2Z3Z4 Z5EYEZ6strabismus suergeryZ7Somewhat Successful<Z83my eye looks better, but I still have double vision"Z9FZGZHZIZJZKZL ZMMild ZNO[[~ [_@[[[[Bonnie F. Keenum;[2White American with some Cherokee Indian ancestors[/[ &Adm. Manager in Construction - Retired [  [ [ [[[[[[[[[[[[[[[I have had surgery for the right jaw as a result of the left jaw being out of line. The left jaw has been a problem from the beginning and reconstructive surgery did completely align the two jaws.[As stated earleir I have been living with intestinal problems for many years and no diagnose solves the problem. I have taken medication for both stomach and intestinal problems with no results. Tests so far have not given any answers. During the years of[%[Has never completely stopped[ [!["[#[$[% [&(~ [)4@[*[+Somewhat Successful[,[-[.[/[0[1[2[3[4[58Z[9????????F[G[H[I[J[K[L[M Very Severe[N@@O\\~ \``@\\\\Sherree Wakefield\white\\ house wife/mother \ A\ Positive\ \ \\\\\\\\\\\\\\C\:not exactly lock jaw, put yes i can't fully open my mouth.\I just found out that i have an iregalure heart beat. And i have endometriosis that justgot trated for. i am currently seeing a maxiofacial sugeon and a plastic sugeon. And i am about to be seeing a ganetics doctore.\ \20\ \!\"\#\$\%\&STRESS\'My daughters birth at age 20 was very trama tizzing i had to have an emergeciy cesection, this past year i had another sugery at i noticed again more deteriation\(I was put on depo lupron shots for my endometriosis this year after my sugery. this stuff also got me to have fluttering heart problems. the reason wy i had to have an emergency cesection when i had my daughter was because a nurse gave me someone elses me\)\*\+\,\-\.\/\0\1\2\3\4\58Z\9@?@?@?@@?@@@??F\G\H\I\J\K\L\MModerate\N(@&@O]]~ ]`@]]]] Nestor Chavez]latin]] stufdent ]  ] ] ]]]]]]]]]]]]]] ]] ]9] ]!]"]#]$]%]&)]*]+],]-].]/]0]1]2]3]4]58Z]9?@@@@??@?F]G]H]I]J]K]L]M Very Severe]N&@@O^^~ ^`@^^^^ Robin Nelson^White^^  Homemaker ^ A^ ^ ^ ^^^^^^^^^^^^^^ ^^^ around 36^ ^!^" ^#20^$^% ^&'^(Okay I have always had a thin face but not to the point where it took everyone's attention when I went out in public but when I got pregnant it started thinning more instead of gaining weight in my face I lost it dramatically and from there it gradually b^)^*^+^,^-^.^/^0^1^2^3^4 ^57^8I have had no surgical procedures. I am consulting with my third doctor(cosmetic surgeon) on Monday, fat injections have been recommended at this stage.Z^9@@@?@@@?F^G^H^I^J^K^L^MSevere^N&@@O__~ _`@____ Marijke Zoon_Dutch_;_ 2PA - personal assistant to SVP Finance at KPNQwest _ O_ Positive_ _ _______________Not really the jaw itself but the muscle connecting the jaws - sometimes when I jawn the muscle is "stuck" and hurts like the stretch is out of it. Then after 1 minute or so, the tension is of the jaw muscle. It only happens when I jawn.__ _2001_ _!I started to have the illness in a period of tremendous stress in my life, when I lost a lot of weight because of not eating or eating not healthy. Since 2 years my life is back to normal as well as my eating habits (spline function and kitney working pro_"_#_$_% _&(~ _)@_*_+ Successful_,_-_._/_0_1_2_3_4 _57_8I had 2 fat injections - the result was good in the beginning but after 6 months the fat disappeared again. After the second operation a little fat stayed from the 1st operation but again 6 months after the 2nd operation it was back to before. Since 2 monZ_9??F_G_H_I_J_K_L _MMild_N@ODl^ mO7\ UqT\B?`PT0aPbPcPdPePfPgPhP8iPjPkPX lPmPpnP(oPpPqPrPsPwtPuPvP wPwxPyPGzPT0{Pw |Pw}P]~PPT0``~ `a@````Shandra Hubbard`AFRICAN-AMERICAN`African American` REGISTERED NURSE ` A` Positive` ` ```````````````I'VE GONE TO DENTISTS OVER THE YEARS TO HELP WITH THE SEVERE PAIN THAT WOULD SEEM TO BE DENTAL PAIN. IT BEGAN IN MY EARLY 20'S AT THE SAME TIME THAT I NOTICED THE DIMPLE IN MY CHEEK. MY PAIN WAS SO GREAT THAT I BLACKED OUT AND CAME TO ABOUT 5-7 MINUTES LA`WHEN I AM SICK(FLU,FEVER,SORE THROAT,ETC.) I FAINT. BEEN HAVING UNEXPLAINED BLACKOUTS SINCE I WAS A TEENAGER, 13 OR SO. I HAVE BLACKED OUT EVEN WHEN I WASN'T SICK. SOME DOC'S IN THE PAST HAVE SAID THAT I AM BORDERLINE "ANEMIC" BUT NOT ENOUGH TO CAUSE ME T` `28` `!`" `#26`$`% `&(~ `)?`*`+Somewhat Successful`,`-`.`/`0`1`2`3`4 `57`8AFTER 3 INTERVIEWS WITH 3 PLASTIC SURG. ONLY 1 SUGGESTED A FAT TRANSPLANT. I HAD IT DONE LAST DECEMBER. I REABSORBED A LOT OF MY FAT. MADE ME VERY SAD BUT MY FACE LOOKS BETTER THAN IT DID. NO ONE EVER MENTIONED ROMBERGS DISORDER. FOUND IT BY ACCIDENT. VERZ`9??????@F`G`H`I`J`K`L`MModerate`N@@Oaa~ a@a@aaaa Vicki Noblea Australianaa  OHS Manager a Ba a a aaaaaaaaaaaaaaaOver the years I do not seem to be able to open my mouth as wide as I used to. For example, I can only take small bites of fruit and cannot eat anything cold.aaaa a!I think the changes to my lifestyle, diet, less stress have assisted in my well being and I do not suffer from headaches as much. However the tissue wasting is still happening, but has slowed over the last 15 years and is now very slight deteriorationa"a#a$a% a&(~ a)@a*a+ Unsuccessfula,a-a.a/Somewhat Successfula0a1a2a3a4 a56a7Somewhat Successfula8Za9?????FaGaHaIaJaKaLaMModerateaN@Obb~ b`a@bbbbHeidi Del-TorchiobFrenchbb Mother b Ab Positiveb b bbbbbbbbbbbbHb?My pains come from my right cheek and my forehead when its coldb bbbb b!b"b#b$b%b&STRESSb'When I'm tiredHb(?Since I was pregnant the seizures happen less often than beforeb)b*b+b,b-b.b/b0b1b2b3b4b58Zb9???@@FbGbHbIbJbKbLbMSeverebN@@Occ~ cb@ccccBryan McDowellc Irish/Germancc student c  c c cccccccccccccc cccc c!c"c#c$c%c&)c*c+c,c-c.c/c0c1c2c3c4c58Zc9@@?????FcGcHcIcJcKcLcM Very SeverecN @@Odd~ da@ddddKelly Silliman$dIrish, Itallion and Englishd.d %The best job in the world...A Mom! :) d Ad Positived d dddddddddddddddOdFEpstein Barr Virus, IBS, Female problems(as I explained in first part)dydpI Can't answer this acuratly because it started again quite recently, but had slowed down for like a year or so.d d!d"sd#jIt started when Iwas planning my wedding 1995 but dfinitly speeded up when I became pregnant early in 1996d$?d%d&Nd'EDefinitly pregnancy...first three months and then after delivery too.d(~ d)@d*d+d,d-d.d/Somewhat Successfuld0d1d2d3d4 d57d8My first reconstructive free flap took 11 hours and was a total failure. I swelled up so much that some skin actually died on my cheek. I actually had a whole there for some time before the stiched it up and now have a scar going across my cheek. My secon"d9FdGdHdIdJdKdLdMModerate dNOee~ ea@eeee Heidi Feblese Spanish/CubaneHispanice Senior Manager/IT e Oe e e eeeeeeeeeeeeeeZeQMy jaw locks up periodically. Its like the muscle is having a spasm and it locks.,e#I have had ovarian cysts and Polypseee e!I had several surgeries. I had tissue removed from my belly and inserted into the face. It didn't seem to work so they removed tissue from my butt and inserted into my face. I think it has slowed down but now i feel like it is affecting my eyes.e"e#e$e% e&(~ e)@e*e+ Unsuccessfule,e-e.e/e0e1e2e3e4e5Ie6@A large piece of dermis from my butt and inserted into my face .e7Somewhat Successfule8Ze9@???????FeGeHeIeJeKeLeMModerateeN @?Off~ fa@ffff Amy BennettfWhite Americanff Computer Professional f Bf Positivef f ffffffffffffff ffff f!f" f#31f$f% f&(~ f)?f*f+f,f-f.f/f0f1f2f3f4f5f6 Brain biopsyf7Somewhat Successfulf8Zf9@????@??@@?FfGfHfIfJfKfLfMModeratefN&@@Ogg~ g b@ggg gSarag CAUCASIANgg  self-employed g Og g g gggggggggggggThey are permanently numb and feel constantly cold & tingling.. when in hot water or cold temps this effect increases and they turn bluish-purple.g gg g21g g!g"g#g$g%g&)g*g+g,g-g.g/g0g1g2g3g4g58Zg9@@@?@@????FgGgHgIgJgKgL gMMildgN*@@OhHhH~ hHc@hHhHhHhIAnnabelle Wood hIhIh IStudent h I h Ih Hh HhHhHhHhHhHhHhHhHhHhHhHhHnhIeWhen the weather is very cold, the fingers on her left hand go white and her hands feels all tinglelyhH hI hIhH hIh H h!Ih"H h#I6h$Hh%Hh&I h'I h(I h)Hh*H h+Ih,H h-Ih.H h/Ih0H h1Ih2H h3Ih4H h5I h6I h7I h8IZh9H@H?H?HH@H?H?H?H?H@H?HH?HFhGHhHHhIHhJHhKHhLHhMI Very SeverehNH"@H@OiHiH~ iHc@iHiHiHiI Amlie LozeauiINorth American, whiteiIi Ioccupational therapist i I i Ii Hi HiHiHiHiHiHiHiHiHiHiHiHiH iIMy hands are often coldiHbiIYMy jaws were not closing properly: One of my jaw was 'oblique' and the other 'horizontal'iII saw a dermatologist recently because I noticed that I lost hair near to my forehead on my involved side: I am taking now Rogaine 5% to try to control this lossiH iI16i Hi!IWhen I had a surgical reconstruction of the forehead with silicone, the atrophy at this level stopped but not at the level of the angle of my jaw and the cheek.i"H i#Ii$Hi%Hi&I i'I i(I i)H2i*H i+Ii,H i-Ii.H i/Ii0H i1Ii2H i3Ii4Hi5Ii6I1)Acrylic (that's the substance the surgeon told me- I was 16) fixed on my skrull and shaped to fulfill the loss 2)Realignment of the 2 jaws by provocative fracturei7I Successfuli8II am waiting for a 3rd one who consists of a soft tissue layer taken on my back to be fixed directly on the inferior jaw to increase the angle of the jaw. To increase the size of my cheek, my surgeon advise me to have fatty material injectionsZi9H@H?HH?H@HH@HHHHH?H@HFiGHiHHiIHiJHiKHiLHiMISevereiNH @H@OjHjH~ jHc@jHjHjHjIMaria BattagliajIWhitejIj IStudnet j I j Ij Hj HjHjHjHjHjHjHjHjHjHjHjHjH$jIIt just started a week ago.jH jI jIjH jIj H j!Ij"H j#Ij$Hj%Hj&I j'I j(I j)H5j*Hj+I Successfulj,H j-Ij.H j/Ij0H j1Ij2H j3Ij4H j5I j6I j7I j8IZj9H@H?H?HH@H?HH?H?H@HHHHFjGHjHHjIHjJHjKHjLHjMIModeratejNH@H@OkHkH~ kHc@kHkHkHkIC. MoodykIWhitekIk IStudent k I k Ik Hk HkHkHkHkHkHkHkHkHkHkHkHkH kIkH kIkIfirst symptom was vitiligo around mouth and nose- He was 4 years old and I took him to an dermatalogist and was told to not do anything but watch it. 12-14 months later, I started noticing the atrophy of the face on that side. At times his face looks likekH kIk H k!Ik"H k#Ik$Hk%Hk&I k'I k(I k)Hk*H k+Ik,H k-Ik.H k/Ik0H k1Ik2H k3Ik4H k5I k6I k7I k8IZk9HHHHH?HH?HH?HHHHHFkGHkHHkIHkJHkKHkLHkMIModeratekNH@HOlHlH~ lH d@lHlHlHlICatherine ParramorelI white - u. klIl Iprimary school teacher l IAl IPositivel Hl HlHlHlHlHlHlHlHlHlHlHlHlH lIlH lI lIlH&lIduring each of 4 pregnancies.l H%l!Islows down during pregnancy.l"Ml#I After birthl$Hl%Hl&STRESSQl'IHgiving birth and periods of stress are sometimes followed by a flare up. l(I l)Hl*H l+Il,H l-Il.H l/Il0H l1Il2H l3Il4H l5I l6I l7I l8IZl9H@H?H@HH@H?H?H?H@H?HH?H?HFlGHlHHlIHlJHlKHlLHlMIModeratelNH(@H@OmHmH~ mHd@mHmHmHmI Ellen FoleymI CaucasianmI#m Imother, landscape designer m IO m Im Hm HmHmHmHmHmHmHmHmHmHmHmHmHmIBasically, when my hands get cold, the ends of my fingers get numb and whitish. It doesn't necessarily have to be cold out. It can sometimes happen when I am holding a cold drink or if I am in very cold air conditioning.mH mI mImH mI37m H m!Im"H m#Im$Hm%Hm&I m'I m(I m)H1m*Hm+ISomewhat Successfulm,H m-Im.H m/Im0H m1Im2H m3Im4H m5I m6I m7I m8ITm9H?H?H@H?H?H?HH?H?H?HH?H?E mFHmGHmHHmIHmJHmKHmLH mMIMildmNH@H@OnHnH~ nHd@nHnHnHnI Shannon Bird nInI n I n I n In Hn HnHnHnHnHnHnHnHnHnHnHnHnHCnI:I ussualy changecherry red colour by just standing outsidenH nI nInH nIn H n!In"H n#In$Hn%Hn&I n'In(I methotresate n)Hn*H n+In,H n-In.H n/In0H n1In2H n3In4H n5I n6I n7I n8IZn9H?HH@H?H@H?H?HHHHHHHFnGHnHHnIHnJHnKHnLHnMIModeratenNH @H@OoHoH~ oHd@oHoHoHoIderek tyler albertsonoIwhiteoI"o Ielementary school student o I o Io Ho HoHoHoHoHoHoHoHoHoHoHoHoH oIoH oI oIoH oIo H o!Io"H o#Io$Ho%Ho&I o'I o(I o)Ho*H o+Io,H o-Io.H o/Io0H o1Io2H o3Io4H o5I o6I o7I o8IZo9H?HHHHHH?HH?HHHHH?FoGHoHHoIHoJHoKHoLHoMISevereoNH@H?OpHpH~ pHd@pHpHpHpIJamie WilkinsonpI CaucasianpIp IReal Estate agent p IOp INegativep Hp HpHpHpHpHpHpHpHpHpHpHpHpH pIpH pI pIpH pI24p H p!Ip"H p#Ip$Hp%Hp&I p'I p(I p)H30+p*Hp+I Successfulp,Hp-I Unsuccessfulp.Hp/I Successfulp0H p1Ip2H p3Ip4H p5I p6I p7I p8IZp9H?HH?HH?HH?HHHH?HHHFpGHpHHpIHpJHpKHpLHpMI Very MildpNH@HOqq~ q6@qqqq Eileen Burnsqscottishq q self-employed part time q  q q qqqqqqqqqqqqqNot as bad now but had terrible problems with feet and hands from a teenager. Colour in hands didnt change but were often very cold then very hot at other times. Feet would change colour also legs seem to have terrible circulation at times, particularly wqq|PROBLEMS WITH CLICKING ETC HAD PROBLEMS RECTIFIED A FEW TIMES WITH I THINK IT WAS AN OSTEOPATH AND CRANIAL SACRAL THERAPIST.qHad quite a few episodes during ME where whole body would go numb a heavy weight like a sort of paralysis. Had an inclident when I was on antibiotics seem to go into a sort of hallucination, my sister and mother found me on floor with my chin and arm sligq5q,It seem to stop when I was a child about 10.q q!q"0q#'Unsure but no obvious dramatic changes.q$q%q&STRESSSq'JThe problems regarding eye etc did appear after chroonic fatigue syndrome.q(When I am ill people say visually it is more noticeable although visually people generally dont notice as I have very slight atrophy .q)q*q+q,q-q.q/q0q1q2q3q4q5"q6Problems with front teethq7Somewhat Successfulq8Zq9?@????@FqGqHqIqJqKqLqM Very MildqN@@Orr~ r8@rrrrTammy Loretta FlemingrScottishrr  Teachers aide r  r r rrrrrrrrrrrrrrrrEyesight and hearing is fading on the affected side of face. Inner ear infections have become a problem in the past few years, once again only on the affected side.r r8r r!r" r#25r$r%r&STRESS:r'1STRESS,(not enough sleep, emotional upheval,ect.)r(~ r)$@r*r+Somewhat Successfulr,r-r.r/r0r1r2r3r4r5Collagenr6In the late 70's early 80's I had many collagine injections. these were useless as the collagine would disappear in about 3 days.r7 Unsuccessfulr8Zr9?@@?@?@@FrGrHrIrJrKrLrMSevererN&@@Oss~ s9@ssssErik R. Copeland2s)White (English, Irish, Scottish heritage)ss student s As s s ssssssssssssss ss s15?s s!s"s#s$s%s&)s*s+s,s-s.s/s0s1s2s3s4s58Zs9?@???FsGsHsIsJsKsL sMMildsN@Ott~ t?@ttttJenifer Reaveley GleedtCanadian , Whitett Student t Bt Negativet t ttttttttttttttt"tHealthy No other problemst t11t Jt!ANot sure If the medications are the reason or not. Methaltrexate.t"t#t$t%t&)t*t+t,t-t.t/t0t1t2t3t4t58Zt9???FtGtHtItJtKtL tMMildtN@Ouu~ uB@uuuuJennifer van Gemertu AustralianuAu 8Student at present/Graduate Diploma of Primary Education u Au u u uuuuuuuuuuuuuI suffered from post operative depression on several occasions and clinical depression at other times. In regard to Asthma; this was instigated when I suffered with severe Pneumonia in 1992.uwunThis occurs randomly and without warning although it is worse when it is cold. It is not a frequent occurance.u1986 Herpes Simplex (orally)requiring hospitalisation 1990 Ingrown toenail operation (infection) requiring hospitalisation 1992 Wisdom teeth removal requiring overnight hospitalisation 1997 Glandular fever with associated hepatitis requiring hospitalisatiu<u313 and then started again at 15 stopped again at 17u u!u" u#15u$u%u&xu'oI do believe that weight gain or loss (gain in my case) makes a big difference to the appearance of the atrophyu(~ u)@u*u+Somewhat Successfulu,u-u.u/u0u1 Successfulu2u3u4u58Zu9??@?@?FuGuHuIuJuKuLuMModerateuN@?Ovv~ vC@vvvv Yvonne McLane$vCaucasian - American IndianvHalf American Indianv Real Estate Sales v Av Negativev v vvvvvvvvvvvvvvvI have had to recently be treated for my left jaw locking. I first went to my primary care physician and he could not do anything for me so I was treated by a Chiropracter. He unlocked my jaw and relieved the pain.vThis begins when I was 14 - had surgery at 16 for scleroderma en coup de sabre. A period of approximately 5 year of seizures in my 30's - hystrorectomy for hardened uterus when I was 37 - scarring of my cornea - and arthritis in several joints.v v19v Qv!HMassive injections of B-12 directly into affected area - scalp, foreheadv" v#16v$v% v&'6v(-I take only daily doses of vitamins and herbs~ v)@v*v+v,v-v.v/v0v1v2v3v4"v5Excision of coup de sabrev6removal of scleroidal section of scalp on left side - 14 yrs old removal of hardened appendix - 35 years old removal of hardened uterus - 37 years oldv7 Successfulv8This has been an ongoing struggle all my life. Believed to be triggered by severe trauma to area of head where scleraderma first appeared.Zv9????@FvGvHvIvJvKvLvMModeratevN@@Oww~ wE@wwwwMary Diane Sprayberryw united Statesww  housewife w  w w wwwwwwwwwwwwew\I have always had cood hads-I have carpul tunel and sonetimes my hands turn blu-black color.wwwmy left side(face-leg-foot-arm and hand has gone numb and my right foot also. no medical reason yhat the dr's can findi have high blood pressure-controled with medicationwww w!w"w#w$?w%w&#w'After birth of first child w()w*w+w,w-w.w/w0w1w2w3w4w58Zw9??@@@?@@FwGwHwIwJwKwLwMModeratewN"@@Oxx~ xG@xxxx Jayne MessiasxEnglishxx Registered Nurse x Ox Positivex x xxxxxxxxxxxxxx xxxx x!Mild atrophy to left cheek, no further sign since derma fat graft but new atrophy has begun in my hairline over last year ( just above my coupe de sabre )x"x#x$x% x&(~ x)@x*x+ Successfulx,x-x.x/x0x1x2x3x4 x57nx8ederma fat graft, donor site lower abdo, fat injections post to tidy up a few depressions around graftZx9????FxGxHxIxJxKxLxM Very MildxN@?Oyy~ yP@yyyy Shawn FoxyWhite/Caucasiany-y $Front Office Assistant/Dental Office y  y y yyyyyyyyyyyyyMy hands do get very cold all the time. It seems like if I am sitting for a small period of time, they get that way, they also turn red, or sometimes a yellowish tint.yyyYes, my loss of hearing in my left ear. The Iritis this past winter kind of made me wonder where I got that from. I had Iritis in my Left eye. I also have a slight asthigmatism in my left eye. Sometimes,my left eye twitches, my right one does not.yyI was about 17 or 18y y!My doctor said it should stop when my face stops growing, and I had my surgery when I was 18, it had seemed to have stopped at that pointy"y#y$y% y&(~ y)@y*y+ Successfuly,y-y.y/y0y1y2y3y4y5y6When I was about 11 Years old, I had a surgery on my left ear to repair a perferated ear drum. about 6 months after that surgery, I started loosing my hearing, then I started noticing a change in my facial features, such as the atrophy on my left side. Why7Somewhat Successfuly8Zy9@@@??@?FyGyHyIyJyKyLyMModerateyN(@?Ozz~ zQ@zzzz Susan Niles<z3Irish, English, German, French, and American Indianzz School Teacher z  z z zzzzzzzzzzzzzz6z-Right perforated Temporomandibular Joint disczVertigo, two bouts of feeling like I was being pulled to the left while attempting to walk. I was given medication, beta balancer (?) and eventually went away after several weeks.zzAge 11z z!z"$z#Age 3 and stopped at age 11z$z%z& INFECTIONz'A possibility of having pneumonia prior to the onset of PRS and then moving from St. Louis, Missouri to Miami, Florida at age 3 1/2. A new environmental change.zz(qI lost the sight of my left eye at age 23. Eighteen months after the birth of my daughter. No changes since then.~ z)?z*z+z,z-z.z/z0z1z2z3z4 z5EYEaz6XStrabismus surgery of the left eye at age 48, 25 years after sight loss of the left eye.z7 Successfulz8Zz9@@@?@@@?FzGzHzIzJzKzL zMMildzN.@@O{{~ {@R@{{{{Sally VanRaemdonck1{(Caucasian- Irish, English,French, German{{ Legal Assistant {  { { {{{{{{{{{{{{{{{{Joint pain Fatigue{{ Late 20's{ {!{"{#{${%{&){*{+{,{-{.{/{0{1{2{3{4{58Z{9F{G{H{I{J{K{L{MModerate{NO||~ |T@|||| Lorin Marlowe|White||  minor child | B| Negative| | |||||||||||||||2|)difficulty falling asleep, staying asleep||| |!|" |#8|$|%|&)|*|+|,|-|.|/|0|1|2|3|4|58Z|9??@@@@@??@??F|G|H|I|J|K|L |MMild|N*@"@O}}~ }T@}}}}Natasha GeddieZ}QAustrian & Irish (biological father) French & Cherokee Indian (biological mother)}=} 4Sr. Litigation Paralegal, musician and music teacher } A} Positive} } }}}}}}}}}}}}}}}As stated in Part I of the survey, a neurologist (Alan Naarden, M.D.) ordered an MRI of my jaw in January, which reflects severe degeneration of the jaw bones which he interprets as a severe case of TMJ. I have been referred to a dentist to see about gett}I am being treated for bi-polar manic depression. I have also been treated for marijuana dependence. I was initially diagnosed with severe depression in 1991; I did not know until last summer that feeling like I am on the top of the world with endless ene}&}14 - started then and stopped} }!}" }#37}$}% }&(~ })?}*}+Somewhat Successful},}-}.}/Somewhat Successful}0}1}2}3}4 }56}7Somewhat Successful}8Recovery is taking A LOT longer than the surgeon said it would. The surgery did take longer and was more extensive than he originally planned, also. He said he had to 're-do' it after he'd done it the first time, because the flesh wasn't the proper color.Z}9??@???@@@?F}G}H}I}J}K}L }MMild}N"@@O~~~ ~X@~~~ ~Martha M. Hollingsworth/~&Irish, Indian, German, Italian mixture~~ dental hygienist ~ O~ Positive~ ~ ~~~~~~~~~~~~|~sI don't believe I have color change but frequently I have cold fingers especiallly the fifth fingers on both hands.~~A couple of times in my early twenties I had what was thought to be a TMJ dysfunction. I clinch my teeth now. Also, I appear to have somewhat short root structure of my teeth on radiographs.~~~~ ~!~"~#~$~% ~&(~ ~)@~*~+~,~- Unsuccessful~.~/Somewhat Successful~0~1~2~3~4~58Z~9@???????F~G~H~I~J~K~L ~MMild~N@@O~ ?Theresa Hildebrand+"American of Irish & German descent  Library Clerk  B Positive    !" #No$% &'(Jon, this is a tough question because it is hard to tell whether facial changes take place because of the natural aging process or from the atropy advancing.)*+,-./0123458Z9@?@???FGHIJKLMModerateN@?OD2lDB_eijW~:QPT0@P@P@P@P@P@P@P@P@P@P@P@P@P@P@P@PPPPwPPP PwPPGPT0Pw PwP]PGG~ G@GGGGJanette NorrisGAustralian-WhiteG GStudent GO G G GGGGGGGGGGGGGGGGAG8Petit mal when I was younger. Also I suffer from excma.GG 16 years old G!G"G#G 12 years old$G%G &GG(~ )G?*G+GSomewhat Successful,G-G.G/G0G1G Successful2G3G4G 5GGG7\8GSI had to have artificial bone inserted as my skull was thin in parts due to RombergZ9G@GG@GG@GG@G?G?GG@GG?G?FGGHGIGJGKGLGMGModerateNG(@G@OGG~ GZ@GGGGPam Kerr (for Nikki)GWhiteGGGG  G GGGGGGGGGGGGGGG GGGG G!G"G #G9$G%G&GGGG)*G+G,G-G.G/G0G1G2G3G4G*5GGGGGGGGGGGGGGGGGGFGGHGIGJGKGLGMG Very Mild NGGOGG~ G\@GGGGyvonne demarino'Gfrench/italian/american indianG Gplant pathologist GO GPositive G GGGGGGGGGGGGGTGKNo color change, but I am often cold in my extremities, feet hands and noseGGGAs a preteen I experienced a time (weeks) when I had joint pains and woke up sore. I went to a doctor at that time, but no diagnosis was made. If I get sick (which is infrequent) it seems to settle in my chest. I used to smoke and had bronchitis. I was toGG G[!GRIt is so difficult to tell, I was undiagnosed for so many years I just ignored it."G#GIn my 30's. I don't know if it speeded up or it was because I married a man 6'4" and he told me it was worsening as he was always looking down at my head$G%G&G'GHow can I know, but I do believe it's hormonally related. I feel it is increasing now and that hormonally I feel like I am having my last "hurrah" before menopause.&(GNone of this is quantitative.)G*G+G,G-G.G/G0G1G2G3G4G5G6GMy "coup de sabre" is only on my head and is covered by my hair. It has just reached my forehead in one spot and I would consider surgery if it crossed my face. 7GG8Z9G?GG@GGGG?GGGG?GGGFGGHGIGJGKGLGMG Very MildNG@GOGG~ G`@GGGG Jacob McGowan.G%Caucasion - American - Father EnglishG GNot applicable - child GG  G GGGGGGGGGGGGGGG GGGG G!G"G #G6$G%G&GGGG)*G+G,G-G.G/G0G1G2G3G4G*5GGGGGGGGGGGGGGGGGGFGGHGIGJGKGLG MGMild NGGOGG~ G `@GGGGno name please GG+ G"program director of alzheimer unit GA GPositive G GGGGGGGGGGGGGGGG/G&obesity, cellulitis, infections, ezemaGGin my thirties. G!G"G#G late thirties$G%G&GTRAUMAr'Gialthough I thought it was in remission and started again after a trauma tothe head as i mentioned before.(GvI can't be sure, but when i was on a diet drug with phentermine I thought that it had speed up the deterioration also.)G*G+G,G-G.G/G0G1G2G3G4G5GGGG8Z9G?G?GGGGG?G?G?GGG?G?GFGGHGIGJGKGLGMGSevereNG@G@OGG~ G@`@GGG'GTina Frances Michelle PatersonG MIXED RACEG Mixed race GNURSERY HELPER GG  G GGGGGGGGGGGGGUGLHANDS ALWAYS FEEL COLD I AM NOT SURE OF BLOOD GROUP I THINK IT IS B POSITIVEGGnGePALPITATIONS, IRREGULAR HEARTBEAT, DEPPRESSION, CATTERACT, MIGRANE, BACK PROBLEMS ON RIGHT HAND SIDE,GG 14 -15YRS G!G"G#G 4YRS TO 10YRS$G%G &GGG(~ )G@*G+G,G-G.G/G0G1G2G3G4G5GTISSUE EXPANDER6GTISSUE EXPANDER TO EXPAND HEAD TISSUE ON BALD PATCH TO ALLOW TISSUE TO BE TIGHTENED MAKING BALD PATCH LESS NOTICEABLE. OPERATION FOR TISSUE TO BE INPLANTED UNDER BROW ON FOREHEAD FAILED CAUSING INFECTION, OPERATION PERFOMED TO REMOVE INPLANTED TISSUE7G Unsuccessfula8GXI HAVE LOOKED AT THE PICTURES BELOW, PICTURE 1 AND PICTURE 2 IS MYSELF AT A YOUNGER AGE.Z9G@G?G@G?G@G?G@G@G@G@G@G@GG@FGGHGIGJGKGLGMGSevereNG,@G&@OGG~ G`@GGGGSamantha Beth Bishop1G(English Canadian - Irish/Scotish/EnglishG GLab Assisstant GO GPositive G GGGGGGGGGGGGGGG GGGG G!G"G#G$G%G &GGG(~ )G?*G+G,G-G.G/G0G1G2G3G4G5GRHINO!6GRhionoplasty (spelling?)7GSomewhat Successful8GZ9G@G?GGG?GG?G?G?G?G?G?GGFGGHGIGJGKGLG MGMildNG@G@OGG~ Gb@GGGGLauren CouchoudG CaucasianG G home maker GB GPositive G GGGGGGGGGGGGGGG GGGG G!G"G#G16-21$G%G&G'Gi noticed the most change after I got married at 16 and had my daughter also at 16 I had another daughter at 18 and a son at 21. the changes have been very gradual, but it is durring these last few years I've noticed the largest change.(G~ )G@*G+G,G-G.G/G0G1G2G3G4G5G6Gbiopsy of my right eye lid at age 3 to determine why my lashes fell out- scar tissue was found. but cause for loss was not determined. at age 12 I had reconstructive surgery of the lid to close the gap. (the center lashes fell out- or 1/3 total lashes) th7G Unsuccessful8GZ9G@G?G@G?G?G?G@GGGGG?GGFGGHGIGJGKGLG MGMildNG@G@O55~ 5b@5556Lauralee Pasko-6$white (western european and spanish)6 6information technology 6 6 5 55555555555556I've been diagnosed with a mild case of Raynaud's. My hands, feet and nose are always cold and become purple and numb in cold weather. Recently, after exercising in the cold rain, my right index finger and like right toe started to ache and I experienced 536*Had TMJ as a child. Went away on it's own.[6Rdepression, fatigue, panic attacks, general confusion and forgetfulness, headaches562-3 months of onset 5 !6"5 #6$5%5&GSTRESS'6stressU(6LI have recently been diagnosed and have not taken any drugs for my symptoms.~ )5*5 +6,5 -6.5 /605 1625 3645 56 66 7686I've noticed the scleroderma plaques seem to start in places that have scars already - I have a scar on my right cheek, which is the result of having a mole removed as a teenager. I've noticed in the past few months, the scar has doubled in size. AdditionZ95@5?5@5?5@5?5@5@5?5@5@5@5?5?FG5H5I5J5K5L5M6ModerateN5*@5(@O55~ 5 c@5556 Sandra Lehman6 caucasion6 6Registered Nurse 6O 6Positive 5 5555555555555 65 666-abnormal CBC diagnosed as bone marrow problem5 6 5 !6"5 #6$5%5&I:'61it has been steadily progressive since it started (6 )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z95@5@5?5@5?5?5?5@5?5@5?5?55FG5H5I5J5K5L5M6ModerateN5@5&@O55~ 5@c@5556 Gokhan Ceylan6White6 6 Technician 6A 6 5 5555555555555 65,6#Change in structure and appearance. 65 6 5 !6"5 #6$5%5&I '6 (6~ )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z95@555?5@5?5@55?5@5@5?5@5FG5H5I5J5K5L5M6 Very SevereN5&@5@O55~ 5`c@5556Henrik Thrling6 kaukasian6 6student 6 6 5 5555555555555a6XThe color of my hands range from very red to almost purple when exposed to cold weather.5 66Have an area, a oval spot (about the size of a small matchbox) under my left breast. I got it when I was about thirteen and got it diagnosed. It was a fairly rare type of skin disease that was said to have most likely been caused by an insect. But since I5 617 5 !6"5#613-16$5%5&6 '6 (6 )54*5+6Somewhat Successful,5 -6.5 /605 1625 3645 56 66 76861st operation: Expander placed under skin over the 'coup' to stretch skin. This for... 2nd operation: An so-called "acrylat" (sort of plastic) were fitted to the bone to cover the 'coup' (left forehead, left side of skull (top of head)). 3rd operation: FaZ95?5?5?55?5@5?5?5?5?5@5@5@5FG5H5I5J5K5L5M6ModerateN5"@5@O55~ 5d@5556Amy Michelle Becker6 caucasian6 6Pediatric Resident 6O 6Pos 5 5555555555555 65Z6QMy jaw often "pops" and is painful, but I have full range of motion of the joint.!6I have pernicious anemia5 6 5 !6"5 #6$5%5&6 '6 (6 )51*5 +6,5 -6.5 /605 1625 364556?666Plastic surgery on my scalp to remove the bald places.76 Unsuccessful 86Z95@5?55?5?5@5?5@55@5?5?55FG5H5I5J5K5L5M6 Very MildN5@5$@O55~ 5@d@5556Deborah D. Fambry36*american with german/indian /irish(decent)6 6medical assistant 6B 6Positive 5 5555555555555V6Mat times my hands have stayed cold and achey and get a blueish tent to them .5 66most all DX:have passed with time . except the vetiligo and the joint pain and swelling also my son has a patch of silver that appeared on the rt side of his head about the size of a half doller when he was 12 after a seizuer.5 6 5 !6"5 #6$5%5&G '6 (6 )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z95@55@55@55@5@5?55@55?5?FG5H5I5J5K5L5 M6N5.@5@O55~ 5`d@5556Monica M. Seiberling6 caucasian6 6occupational therapist 6 6 5 5555555555555 65 6 65 6 5n!6eI wish I knew. My docs thought that the meds I was on may have helped (Aspirin, Tegretol, Propranolol"5 #6$5%5&6 '6 (6 )5*5 +6,5 -6.5 /605 1625 3645 56 66 7686My physicians advised that I avoid surgery- not sure what "speeds up" the atrophy. Injury to the face was one theory and so they said try not to have any surgeryZ95@55@55@555@5?55?55@5FG5H5I5J5K5L5 M6MildN5$@5@OGG~ Gb@GGGG Alisa SiskG caucasionG Gteacher GO G G GGGGGGGGGGGGGGGNGEIt was thought to be an inflammation of the TMJ and it does re-occur.GGG GK!GBIt has progressed across my scalp and just above the left eyebrow."G#G$G%G&GGGG)*G+G,G-G.G/G0G1G2G3G4G5GGGG8Z9G@G?G@GG@G?G?G@G@G?G?GG?GFGGHGIGJGKGLG MGMildNG(@G@O vExclude Part 2 ID HAD completeKnows blood groupLock Jaw Name Ethnic origin  Occupation  Blood Group Rhesus Lupus  Scleroderma RARaynauds MS IBDThyroid Ank SpondEye inflammationAsthma CFS DepressionVitiligo Cold Handsinfo about cold handsProblems with JawInfo about JawOther Medical Problems$Ever stopped or slowed downHow old when stopped$ Anything make it slow down?$!More about stopping factors"Ever speeded up#How old when speeded$Pregnant when speeding"%Anything make it speed up&Classification$'More about speeding factors (Other speed slow things) Number ops *Fat+ Fat outcome,Silicone-Silicone outcome .Flap/ Flap outcome 0Bone1 Bone outcome2 Trigeminal3Trigemina outcome4Other5 OTHER OP CODE6 Other details7 Other outcome8 Other surgery 9HAD1 :HAD2 ;HAD3 <HAD4 =HAD5 >HAD6 ?HAD7 @HAD8 AHAD9BHAD10CHAD11DHAD12EHAD13FHAD14GLine?H Corner of EyeIMiddle of EyebrowJ Near middleK Jaw / CheekL Chin indentMSeverityN Anxiety ScoreODepression Score!B? D D  O& @@ % OAZ- J@ % PositiveAZ$ @ % AZ$ @% AZ$@%AZ$@%AZ$%AZ$@%AZ$2@%AZ$@%AZ$9@%AZ$7@%AZ$,@%AZ$K@%AZ$:@%AZ$H@%AZ$J@%AZ $@Q@ %AZ$ 8@"% AZ!$",@$%""AZ#$$9@%%$$AZ$%B@)%%%AZ &' (AV#)Hx@* %))B$*M@,%**AZ+$,.@.%,,AZ-$.<@0%..AZ/$00@2%00AZ1$24%22AZ3$4E@G%44AZ*5F$GS@K%GGAZH"@>@<@J$K\@L%KKAZ$L@P@N%LLAZM Significant'NP@O%NN>7AZ'O0@ %OO>7AZ!Bn'i? D D  A& B@% AAZ- 8@% NegativeAZ Lupus  Scleroderma RARaynauds MS IBDThyroid Ank SpondEye inflammationAsthma CFS DepressionVitiligo Cold Hands*Dqq?D%B *D? D%B* DUUUUUU?"D % B!*"D98?$D"%""B#*$D88?%D$%$$B*%D?)D%%%%B &' (MEDi#)@N %))BL*LM Highly sig(ND@O%NN>10AZ(O @ %OO>10AZ!B?& D D  AB' ?% ABAZ: $%Stress(&+%&&AZ ')* Successful=+'PB ?-'%++ SuccessfulAZ%++B,=-'B!?/'%-- SuccessfulAZ%--B.=/']tE]?1'%// SuccessfulAZ%//B0=1''l&?7'%11 SuccessfulAZ%11B2'6=7'?G'%77 SuccessfulAZ%77B$8F)G'UUUUUU?HDG%B!H'؉؉?I DHDG!I'ى؉?J DIDG!J'oo?K DJDG)K'98?LDK%B)L'98? DL%B MO!B4l7?& D D  B& .@% BAZ: $%Trauma'&)%&&Dp&AZ'(Number with surgery#)X@+ %))B*Somewhat SuccessfulF+'?-0%++Somewhat SuccessfulAZ%++B,F-'RJ)?/0%--Somewhat SuccessfulAZ%--B.F/'F]tE?10%//Somewhat SuccessfulAZ%//B0F1'F]tE?70%11Somewhat SuccessfulAZ%11B2'6F7'?N0%77Somewhat SuccessfulAZ%77B$8FGLine?H Corner of EyeIMiddle of EyebrowJ Near middleK Jaw / CheekL Chin indentM Significant)N'rq?ODN%B)O'qq?DO%B Denomin# @X@ % B  Lupus~ @)'UUUUUU?+D%B8)* Unsuccessful?+'ҤI&M?-)%++ UnsuccessfulAZ%++B,?-'B!?/)%-- UnsuccessfulAZ%--B.?/']tE?1)%// UnsuccessfulAZ%//B0?1'F]tE?7)%11 UnsuccessfulAZ%11B2'6?7'?N)%77 UnsuccessfulAZ%77B08LM Highly sig)N'L[?ODN%B)O'^?DO%B"  Scleroderma~ @)'UUUUUU? D%BO  Pos( Q^Cy ?D D D    RA~ @)'UUUUUU?GD%BpEFLine and Cheek+G'ŹQ?%pGGDvGAZqHO  Neg  Raynauds~ @)'rqǡ?MD%B|KL Very Severe'MCA@N%MMDzMAZ)N'qq?DM%BO"  MS~ )'MD%B6( )% * Successful+Somewhat Successful, UnsuccessfulD-KLSevere'MCJ@N%MMDyMAZ)N'qq?DM%BO"  IBD~ @)'rqǡ?MD%B4'(Surgical TreatmentsL)KLModerate'MCA@N%MMD}MAZ)N'qq?DM%BO" Thyroid~ 0@)'qq?)D%B4'(Any surgical treatment)'}A_?M D) *- +- ,-D-K LMild'MCJ@N%MMDMAZ)N'qq?DM%BO"  Ank Spond~ @)'UUUUUU?)D%B4'( Fat injections)'2gs?* D**'PB ?+D++'?,D+,'ҤI&M?MD+D-KL Very Mild'MCJ@N%MMDeMAZ)N'qq?DM%BO" Eye inflammation~ 9@)'88?)D%B4'#( Flap / pedicle procedure)'!o?* D.*']tE]?+D/+'F]tE?,D/,']tE?D/L-O" Asthma~ 3@)'98?)D%B4'( Bone implant)'?* D0*''l&?+D1+'F]tE?,D1,'F]tE?D1L-OBnzX9I"n_4/ PT0PPPP CFS~ *@)'qq?)D%B4'( Silicone injections)'qGwĽ?* D,*'B!?+D-+'RJ)?,D-,'B!?D- Depression~ H@)'rq?D%B>,Vitiligo~ 8@)'UUUUUU?D%B4'(Other Operations), Cold Hands~ D@)'88?ndsD%B4'(Alloderm injections~ )@* 1 successful +,:'(Tissue Expander~ )@*Both unsuccessful +,GP%(  p  6NMM?IQ]`$  "??3` !*` !+` !,` !-`bXf3d23 M NM4 3QQ ;MMQ ;LLQ3_4E4D $% M 3O&-Q4$% M 3O&+Q4FA8 3OL 3 b#M43*#M! M4% : :eM3O&,Q .Number of Respondents'4523  O43" 44% VJ M03O|$&*Q N%How bad would you rate your disorder?'44eee xp  6NMM?IQ]`$  "??3` !/` !0` !1` !2`bXf3d23 M NM4 3QQ ;MMQ ;LLQ3_4E4D $% M 3O&2Q4$% M 3O&0Q4FA8 3OL 3 b#M43*#M! M4% : :eM3O&1Q .Number of Respondents'4523  O43" 44% VJ M03O|$&/Q N%How bad would you rate your disorder?'44eee xx  6XPP? %On% ]4@T$ k(5AS0ÁX <JSTONE: and during< ,>Gxx  6LNXPP? 'KSn'XU]4@LN$ _7Bs`p=8X <JSTONE: SURGERY< ,9Ԏxx  6NXPP? %ORn %WU]4@N$ ,LZ'X <JSTONE: And during preg< ,X]xx  6OXPP?  k7k]4@OL$ c 1BX  < JSTONE: Pos< , [xx  6xOXPP?  kNk]4@xO$ **O8MX  < JSTONE: Neg< ,  $JSTONE\&JSTONEd$JSTONE JSTONE JSTONE>C@III   dMbP?_*+%MHP LaserJet 5000GN [D-BLOCK]  +.zz+hjil mopqrstu      d(Untitled)+" d??U} }  } "} !} U} } } } } q} q} U} !!.} ""} ##q} $$ } %%q} && } ''} ((} ++} 55} 66PPT0PPPPPPPP P: P$ P$ P$ PP$PP$P$$P{PPP$PPP$P{P$Pz0PP]PP~ Exclude Part 2 ID HAD completeKnows blood groupLock Jaw Name Ethnic origin  Occupation  Blood Group Rhesus Lupus  Scleroderma RARaynauds MS IBDThyroid Ank SpondEye inflammationAsthma CFS DepressionVitiligo Cold Handsinfo about cold handsProblems with JawInfo about JawOther Medical Problems$Ever stopped or slowed downHow old when stopped$ Anything make it slow down?$!More about stopping factors"Ever speeded up#How old when speeded$Pregnant when speeding"%Anything make it speed up&Classification$'More about speeding factors (Other speed slow things) Number ops *Fat+ Fat outcome,Silicone-Silicone outcome .Flap/ Flap outcome 0Bone1 Bone outcome2 Trigeminal3Trigemina outcome4Other5 OTHER OP CODE6 Other details7 Other outcome8 Other surgery 9HAD1 :HAD2 ;HAD3 <HAD4 =HAD5 >HAD6 ?HAD7 @HAD8 AHAD9BHAD10CHAD11DHAD12EHAD13FHAD14GLine?H Corner of EyeIMiddle of EyebrowJ Near middleK Jaw / CheekL Chin indentMSeverityN Anxiety ScoreODepression Score~ ~ 6@ Eileen Burnsscottish  self-employed part time     Not as bad now but had terrible problems with feet and hands from a teenager. Colour in hands didnt change but were often very cold then very hot at other times. Feet would change colour also legs seem to have terrible circulation at times, particularly w|PROBLEMS WITH CLICKING ETC HAD PROBLEMS RECTIFIED A FEW TIMES WITH I THINK IT WAS AN OSTEOPATH AND CRANIAL SACRAL THERAPIST.Had quite a few episodes during ME where whole body would go numb a heavy weight like a sort of paralysis. Had an inclident when I was on antibiotics seem to go into a sort of hallucination, my sister and mother found me on floor with my chin and arm slig5,It seem to stop when I was a child about 10. !"0#'Unsure but no obvious dramatic changes.$%&STRESSS'JThe problems regarding eye etc did appear after chroonic fatigue syndrome.(When I am ill people say visually it is more noticeable although visually people generally dont notice as I have very slight atrophy .)*+,-./012345"6Problems with front teeth7Somewhat Successful8Z9?@????@FGHIJKLM Very MildN@@O~ ~ 7@ Mandy PerroAmerican  wife/mother  A   I do not have Lupus, but my mother does have a form of it. (she doesn't have the butterfly rash) I do not have rhuematoid arthritis ( although my mother's side of the family has a very strong history); I do have osteoarthritis in my hips ( I was born withHad TMJ; has orthoganathic (?) surgery to pull out the upper jaw ( alot ) & lower jaw. I have 'the smallest adult mouth" that most dentist & anesthiologists have ever seen. I have a very small opening when I open my mouth the most that I can.I have a history of mastoid disease on left side (PRS side) & profound hearing loss on that side as well. Have migraines--seem to be centered in left temple mostly. I was born at 7 months gestation, weighing 2.5 pounds. Having vision problems in my left e J!Awhen I had the jaw surgery in my 20s, that seem to exacerbate it."# see above$%&SURGERY'surgery(~ )@*+Somewhat Successful,-./01Somewhat Successful2345Non-bone6bone grafted from my scalp to left eye orbit. When they attempted to implant a non-bone cheek bone, my body rejected it & they had to remove it. I was also left with a dark dimple underneath the eye.7 Unsuccessful8Z9??????????@?FGHIJKL MMildN@@O~ ~ 8@Tammy Loretta FlemingScottish  Teachers aide     Eyesight and hearing is fading on the affected side of face. Inner ear infections have become a problem in the past few years, once again only on the affected side. 8 !" #25$%&STRESS:'1STRESS,(not enough sleep, emotional upheval,ect.)(~ )$@*+Somewhat Successful,-./012345Collagen6In the late 70's early 80's I had many collagine injections. these were useless as the collagine would disappear in about 3 days.7 Unsuccessful8Z9?@@?@?@@FGHIJKLMSevereN&@@O~ ~ 9@Erik R. Copeland2)White (English, Irish, Scottish heritage) student  A     15? !"#$%&)*+,-./0123458Z9?@???FGHIJKL MMildN@O~ :@Pip Rutherford Australian  Sales Rep  A Negative  Especially during the winter months (some mornings get to -4 degrees) my hands will be like blocks of ice and the rest of my body beautifully warm. My right hand can be colder than the left at times. For instance, today is a very mild to warm day and my rI ticked "yes" for Ankylosing Spondylitis. I think I mentioned to you before about my back problems and operation. I had spondylolisthesis which resulted in a fusion and instrumentation at the L5-S1 and a laminectomy. So I do not know whether they are oneIn my early teens !"#$% &(~ )@*+ Successful,-./0123456Fat was taken from my stomach and implanted in my right cheek area (just like stuffing a chook!!) Extra fat was implanted because over a period of about 12 months it subsided. The operation was an experiment (29 years ago)because the doctor did not know h7 Successful8I came beack to this spot after seeing the pictures. I have shrinkage of my right thigh with thinning of the fatty tissue. This was originally diagnosed as scleroderma after a biopsy was done. So my question is "Is there a connection with scleroderma and Z9??FGHIJKLMModerateN??O~ ;@ Julie BassettEuropean. %Human Resource/Training & Development  O Positive  I have suffered from Asthma since I was 5 after having whooping cough and pneumonia (I hope that spelling is right). It isn't severe though.ZQI do have times when I get some joint pain on my affected side but not too often.Gallbladder problems (Gallbladder removed 5 years ago) Back trouble (L5 disc disease) I also have odd teeth - on the related side, I have a molar which has one prong instead of four although one dentist says he thinks it is actually my wisdom tooth as I dAbout 19 !It's hard to tell but I did try a homeopathy treatment and large doses of vitamin B (injections once a week for 6 weeks, I'm not sure on the amount but could find out if you're interested)"#$% &(~ )?*+ Successful,-./0123458Z9FGHIJKL MMildNO~ <@ Mitchell Hyde australian   MDjaw has gone out of shape. teeth don't close properly on right side.right eye has sunken back a bit and dose'nt close properly somtimes ,when he is asleep. having trouble with his mouth. dribbleing uncontrolable. xome trouble drinking from cup. .!%after treatment, already talked about"#four and a half$% &''(we sent info with first survey)*+,-./0123458Z9@@?@@??FGHIJKL MMildN&@@O~ =@Maecil Maris HiltonAmerican-- German! retired-was bank officer       !"#$% &(~ )@*+ Unsuccessful,-Somewhat Successful./ Unsuccessful012345%6Silicone implant on forehead7Somewhat Successful8Z9??@?@@@??@??FGHIJKLMSevereN$@ @O  ~ >@     Lucian Smith  caucasian  military AB Negative              / &My hands tend to get cold very easily.   My blood type is AB-, but I could not select this above. I do have a problem with my left eye becoming dry because my eyelids do not completely close.  22  ! " # $ % &'| (sMy rombergs seems more pronounced in direct correlation with the amount of sleep I get. Less sleep, more pronounced~ )@ * + , - . /Somewhat Successful 0 1 2 3 4 58Z 9@?@???F G H I J K L MModerate N@?O  ~ ?@    Jenifer Reaveley Gleed Canadian , White  Student B Negative                 " Healthy No other problems  11 J !ANot sure If the medications are the reason or not. Methaltrexate. " # $ % &) * + , - . / 0 1 2 3 4 58Z 9???F G H I J K L MMild N@O  ~ @@    Kimberley McMichael. %Caucasian- (German, Swedish, English) $ Speech Language Pathologist A Positive                  a gestational autoimmune disease- antiphospholipid antibodies during pregnancy The antibodies effect the blood's clotting factor causing it to clot more quickly which results in the babies low birth weight and possible miscarriages and blood clots in the    16 and 30  !decrease in stress, and active exercise, It began at 15 when I hit puberty. After my body adjusted to the new hormones the disease seemed to stop a year later. During the first year of the disease I lost tissue under my eye with hyperpigmentation, but no  " #age 25 and also age 29 $> % &STRESS 'zpreganancy-possibly related to hormones again and stress, lack of exercise and poor diet all seems to cause it to speed up (I feel that regular exercise and stress reducing exercise like yoga have a significant impact on improving circulation and increasing immunity and causing the disease to slow down. Also.... I feel that improving my diet by limiting animal meats and produc ) * + , - . / 0 1 2 3 4 5Alloderm 6I am scheduled to have alloderm insertion. Alloderm is an inert sterilized skin in which the cells have been removed to avoid a reaction. Alloderm is now being used instead of silicone. My surgeon feels that fat injections which he used in the past were n 7 8|I will send you an email about the success of my surgury in November as it takes about 2 months for the swelling to go down.Z 9????F G H I J K L MMild N@?O  ~ @@    Michelle MacLellan  Caucasian  Insurance Salesperson  Negative                   Approx 22 years old  ! " # $ % &(~ )@ * +Somewhat Successful , - . / Successful 0 1 2 3 4 5 6I have had a muscle flap implant in my cheek. The muscle was harvested from my right leg. It is also the right side of my cheek in which has atrophied. I also had a small dent in my forehead. She used a artificial implant for this area. The operation took 7 Successful` 8WNOTE: My 2nd Cousin has been diagnosed with Scleroderma and my mother has Fibermyalgia.Z 9?@@??@?F G H I J K L MModerate N @@O  ~ A@    Meagan Elizabeth Lee- $White, Irish/French/English Heritage  none  Negative               (written by Meagans' mom, Ellen) Meagan has trouble with her extremities, poor circulation? Her fingers/hands get chilled easily and turn very white   Epilepsy, currently under treatment with Neurontin. Left side impairment(lack of right brain function), facial atrophy, dental work done (braces & retainer) to correct teeth alignment. Headaches (migrane-type), counseling for depression. Trial of medicati  17  ! " #9 $ % &PUBERTY? '6rapid growth (age appropriate) onset of periods maybe. (~ )? * + , - . / 0 1 2 3 4 5 6Meagan had a heel-cord lengthening (left leg) to improve her gait and make her be able to walk better (her foot more flat to the ground) she was becoming rapidly unable to run and limped badly. We tried a brace for over a year to stretch out her leg. 7Somewhat Successful 8Z 9@?@?@??@@@@F G H I J K L MModerate N.@"@O~ A@Kathleen GoodspeedWhite/American. %Vocational Counselor/Graduate Student  B Positive  ulMy jaw sometimes remains open and is exceedingly painful and I need to physically shut my mouth with my handHeadaches, severe body aches and exhaustion - which usually occurs with the headaches in the fall. Okay this is a wierd one. After my last surgery which was 15 months ago I broke out into a severe outbreak in my genitials. They thought it was Herpes but I'off and on and then progresses !Hard to tell - I just went to the doctor and he said that my cartlidge in my nose is being reabsorbed. It appears to progress in the fall and stop in the late winter",##22 after I had my son it went crazy$?%&'My disease had stopped at the coup de sabre and when I became pregnant or after I delivered I lost the whole side of my face relatively quickly(~ )$@*+,-./ Successful012345Tissue Expander6Tissue expander - unsuccessful- infection - many revisions as the disease continues to progress. Much to do with my nose. Also a lip flap.7 Unsuccessful8Z9???@FGHIJKLMSevereN@O~ B@ Adele LiuItalian/American Teacher     JAMy hands are usually cold and sometimes have a tingling sensation  late 30's !"#$%&STRESS'Stress(Truthfully, I have no idea what provokes the continuing atrophy. My CT scan revealed that even my sinuses have atrophied. And I feel the atrophy is continuing. In part, that my be a factor in why a reconstructive surgeon will not perform corrective surger)*+,-./0123458Z9@???@???@??FGHIJKLMSevereN$@@O~ B@Jennifer van Gemert AustralianA 8Student at present/Graduate Diploma of Primary Education  A   I suffered from post operative depression on several occasions and clinical depression at other times. In regard to Asthma; this was instigated when I suffered with severe Pneumonia in 1992.wnThis occurs randomly and without warning although it is worse when it is cold. It is not a frequent occurance.1986 Herpes Simplex (orally)requiring hospitalisation 1990 Ingrown toenail operation (infection) requiring hospitalisation 1992 Wisdom teeth removal requiring overnight hospitalisation 1997 Glandular fever with associated hepatitis requiring hospitalisati<313 and then started again at 15 stopped again at 17 !" #15$%&x'oI do believe that weight gain or loss (gain in my case) makes a big difference to the appearance of the atrophy(~ )@*+Somewhat Successful,-./01 Successful23458Z9??@?@?FGHIJKLMModerateN@?O~ C@ Yvonne McLane$Caucasian - American IndianHalf American Indian Real Estate Sales  A Negative  I have had to recently be treated for my left jaw locking. I first went to my primary care physician and he could not do anything for me so I was treated by a Chiropracter. He unlocked my jaw and relieved the pain.This begins when I was 14 - had surgery at 16 for scleroderma en coup de sabre. A period of approximately 5 year of seizures in my 30's - hystrorectomy for hardened uterus when I was 37 - scarring of my cornea - and arthritis in several joints. 19 Q!HMassive injections of B-12 directly into affected area - scalp, forehead" #16$% &'6(-I take only daily doses of vitamins and herbs~ )@*+,-./01234"5Excision of coup de sabre6removal of scleroidal section of scalp on left side - 14 yrs old removal of hardened appendix - 35 years old removal of hardened uterus - 37 years old7 Successful8This has been an ongoing struggle all my life. Believed to be triggered by severe trauma to area of head where scleraderma first appeared.Z9????@FGHIJKLMModerateN@@O~ C@Karen E.A. Smith caucasian( behaviour management specialist  Positive  pain in the left side of my jaw and it has tempoararily locked on occassion .. nothing severe or long - lasting ... just enough to cause concern then disappear again!suspect: bullous lung disease last winter ... saw a specialist who determined that there was little to be concerned about... did not confirm that diagnosis. !"#$%&)*+,-./0123458Z9?@?@@@@?@?@@??FGHIJKL MMildN&@&@O~ D@ Lory BriccoWhite Registeres Nurse  O Negative  My jaw does "lock up" briefly from time to time - also, I tend to "gring" my back teeth - not while asleep, but I while I'm awake."approx 33-35 years of age ?!6Plaquenil therapy appeared to slow progression of sx's" #currently (43years old)$%&DRUGSU'LI'm no longer taking plaquenil - I suspect this is why the sx's have sped up( none known~ )?*+,-./01234 5EYE6The doctor did surgery on my "good eye" (right)to make it appear more symmetrical to my affected eye (right) - It did make my eyes more symmetrical, but now my right eye appears to be receding again and my eyes are about as asymmetrical now as they were b7Somewhat Successful8Z9????FGHIJKLM Very MildN@?O~ D@ Kathryn Large 6 -Administrative Assistant Construction Company      started 4 ended 4 !"#$% &(~ )@*+,-Somewhat Successful./Somewhat Successful0123456silicone implant for cheekbone - also had surgeries to remove excess tissue. Was always around 100 lbs. Now am 120 so face put on weight and sagged - bummer. Need facelift or removal - going to get second opinion - surgeon concerned about nerve damage wit7 Successful8Z9FGHIJKLM Very SevereNO~ E@Cal. MayWhite automotive painter       !"#$% &(~ )?*+ Unsuccessful,-./ Unsuccessful0123458Z9???FGHIJKLMModerateN@?O~ E@Mary Diane Sprayberry united States  housewife     e\I have always had cood hads-I have carpul tunel and sonetimes my hands turn blu-black color.my left side(face-leg-foot-arm and hand has gone numb and my right foot also. no medical reason yhat the dr's can findi have high blood pressure-controled with medication !"#$?%&#'After birth of first child ()*+,-./0123458Z9??@@@?@@FGHIJKLMModerateN"@@O~ F@ Marie Winget Caucasian5 ,house wife / "Hallmark" card clerk part time  O Positive    !"#$% &(~ )$@*+Somewhat Successful,-./Somewhat Successful01Somewhat Successful23458Z9?@??@???@FGHIJKLMSevereN@@O~ F@ Sandra ShawIrish caucasian& Medical Laboratory technician  O Negative  zqI would rate it as moderate. My jaws crack every time I open my mouth but it's because my jaws are an uneven size Possibly ~ 18 years old !"# 14 years old$%&I'@Probably just a growing spurt, that may have emphasised it more.(~ )@*+ Unsuccessful,-./ Unsuccessful01234 578One of the reasons I was given for the lack of success by the surgeon was that the site where they took the flap/graft from (on my back, same side as the affected side of my face)seemed to have smaller than expected blood vessels. Near this site I also ha"9FGHIJKLMModerate NO~ G@ Jayne MessiasEnglish Registered Nurse  O Positive    !Mild atrophy to left cheek, no further sign since derma fat graft but new atrophy has begun in my hairline over last year ( just above my coupe de sabre )"#$% &(~ )@*+ Successful,-./01234 57n8ederma fat graft, donor site lower abdo, fat injections post to tidy up a few depressions around graftZ9????FGHIJKLM Very MildN@?O~ G@Jennifer L Reese caucasian  Homemaker  O Positive  ?6My jaw will lock up when eating, talking, and yawning.  !23" #17$% &'(It seemed to speed up in my late teens and then slowed down in my early twenties. We can't really associate anything specific causing the rate of proggresion to speed up or slow down~ )?*+,-./Somewhat Successful01234 578I had the surgery as a temporary solution when I was 13 years old. They suggested that I wait until adulthood before having a more permanent procedure. At 21 I found a group of docters in my area to perform reconstructive surgery, however my insurance denZ9??@?@??@?@@???FGHIJKLMSevereN$@"@O~ H@Angela Mary SherningEuropean local mushroom farm      colder than most - bothJaw locks when yawning !" #35$%& 'no(~ )4@*+ Unsuccessful,-./ Successful01234 5EYEC6:Eye operation - brought eye out enough to stop it watering7 Successful8Z9?????@?FGHIJKLMSevereN@@O~ H@Patrick Ward Hindman English and Teacher and writer     I have always had problems with the cold and my fingers. It takes a small amount of cold to produce painful digits. Along with this extreme discomfort comes swelling of the fingers and the loss of color. As they warm they may tingle and become red but stiWhat as list! I have non symtematic asthma which is a chronic condition. Also chronic is levo scoliosis with rotation of the vertebrae, mostly in the lumbar spine. My deceased mother was afflicted with rheumatoid arthritis. I have a history of arthritis,  !"#$%&'It seems to me the atrophy on the right side of my face did not happen at the same time the coup de sabre occurred. I think the facial atrophy, while much slower, happened about 15 years prior to the appearance of the coup de sabre. NOTE: Not being perfec ()*+,-./0123458Z9@?@?@?@@?@@@?@FGHIJKLMModerateN.@*@O~ I@ Ines Braham#i don't like this question student  A  Pos  it's incredible that you mention this: in fact: i've always sufferd from very very cold hands and the nails turn into a blue color: and people always retire their hands when they shake mijne!!  15 !"#$% &(~ )@*+Somewhat Successful,-./012345EXCISON6the doctors hed sliced a piece of my chin to make it seem more symmetrical and then in an other operation they've injected fat: but the results are not very concluding, and also i have to have another operation to reinject fat.7Somewhat Successful8Z9@?@@?FGHIJKLMModerateN@@O~ I@Sylvie Adele HalseyEnglish  School girl  O Positive  1(My mother suffers from Raynaud's diseasewnDaunes syndrome (hope the spelling is correct) Constant runny nose as an infant leading to removal of adenoids !"#$% &(~ )?*+Somewhat_successful,-./0123458Z9????@FGHIJKL MMildN@?O~ J@Andrea Bodenberg) German/French/Pennsylvania Dutch  Event Planner  A Negative  ZQusually my hands and feet are colder than anyone elses. especially in the summer.jaw was too small for my teeth. had to have braces because of buck teeth and many teeth pulled because my jaw was too small for all my teeth. even had my lower wisdom teeth out at the age of seven.fourteen !{the doctor that i have been seeing said that the disease's course usually runs about ten years. mine, however, took twelve."#$% &(~ )@*+Somewhat Successful,-./01 Successful2345JAW BONWw6nthe second surgery was to shave down my jaw bone (actually my rib) because it hadn't rounded off within a year7 Successful8Z9?@??????FGHIJKL MMildN@@ODl_kl7#YWgR~*k` PT0!P"P#P$P%P&P'P(P)P:*P$+P$,P$-P.P$/P0P$1P$$2P{3P4P5P$6P7P8P$9P{:P$;Pz0<P=P]>P?P  ~ K@    Nicholas Rossy Lebanese Lebanese Student                    Just to let you know, I am filling this in for my 14 year old son, Nicholas. He was fortunate in that the coup de sabre seemed to stop on its own. He is undergoing treatment to repair the damage thru a series of fat injections, and with a cream to remove   10  ! " # $ % &(~ )@ * +Somewhat Successful , - . / 0 1 2 3 4 57 8Depending on this last injection, the doctor may remove some additional fat and inject more, as he is not convinced artificial injections will be more successfu.Z 9F G H I J K L M Very Mild NO!!~ !K@!!!! Ann Dundon!BRITISH!! ADMINISTRATOR/SALES ! A! ! ! !!!!!!!!!!!!!YEARS AGO I NOTICED MY HANDS WOULD WRINKLE UP LIKE VERY OLD HANDS THEN GO NORMAL WHEN I WAS YOUNGER. MY FINGERS ACHE SOMETIMES AND YES HAVE FELT COLD OFF AND ON EVEN IN THE SUMMER. I HAVE ALSO EXPERIENCE NUMBNESS IN THE HANDS!!I HAVE ALWAYS HAD THE JAW PROBLEM. MY PLASTIC SURGEON HAD SAID THE JAW IS NOT CONNECTED AT ALL. I KNOW IT IS. IT CAN BE VERY PAINFUL AND WORSE WHEN I AM STRESSED OUT. I CLENCH MY TEETH A LOT THIS DOES NOT HELP. THE INSIDE OF MY MOUTH IS DIFFERENT FROM THE!EYES, STOMACH, PAINFUL JOINTS, BACK PROBLEMS, HEADACHES, NECK PROBLEMS, DEPRESSION (ALL IN THE MIND OF COURSE, ACCORDING TO THE DOCTORS).!!! !!!"!# NOT REALLY!$!% !&'!(MY ATROPHY SEEMED TO HAVE STOPPED BEFORE I HAD ANY OPERATIONS. (BEFORE 37 YEARS OF AGE) AFTER THE 3RD OPERATION THE ATROPHY CAME BACK, THIS TIME AROUND THE EYE SOCKET, TEMPLE,MOUTH AND ITS SEEMS LIKE THE SIDE OF MY HEAD AS WELL. I AM NOW 44 AND HAVING WOR~ !)@!*!+!,!-!.!/Somewhat Successful!0!1!2!3!4 !57!8AFTER HAVING THE OPERATIONS I AM SOMEWHAT MISTIFIED AS TO WHETHER WHAT PAIN IS DUE TO THE PROCEEDURE OR THE ONGOING ATROPHY. I STILL HAVE A LOT OF PAIN IN THE FACE. I DO NOT KNOW IF THE ATROPHY IS ACTUALLY EATING THE MUSCLE IMPLANT UNDERNEATH AS THE AFFECZ!9@?@@??@?@??F!G!H!I!J!K!L!M Very Severe!N&@@O""~ "L@""""Deborah Mitchell;"2Australia - Irish, Welsh, English, French, Spanish"" Public Servant " B" Positive" " """""""""""""""Quite severe spasms from 12 to 40+ - haven't had one for a while now (I am 46). Mouth used to snap shut with no warning - I often bit the inside of my cheek or tongue - very painful 'knotted muscle' at temple on my affected side - and I couldn't open my m"I have small cysts - forearm, palm, and abdomen - about 5 all up. Doctor said they were nothing to worry about. After a recent health check at my work - I was referred to my doctor as my cholesterol was so low it didnt register on the machine. Doctor orga""About 30" "!"" "#No"$"% "&(~ ")@"*"+Somewhat Successful","-"."/Somewhat Successful"0"1"2"3"4"58Z"9?@?????F"G"H"I"J"K"L"MSevere"N@?O##~ #L@####Missy Thompson#american/white##  pharmacist # A# Positive# # ################The eye on my affected side has been irritated for the last 2 months. I have been to 2 eye doctors and neither has been able to find anything wrong.##I don't remember# #!#" ##32#$@#%#&SURGERY#'I had my first reconstructive surgery on my forehead then became pregnant 3 months later so I am not sure which was the reason for the speed-up. I was also pregnant at 18 but did not notice any change at that time.#(~ #)?#*#+#,#-#.#/#0#1Somewhat Successful#2#3#4#58Z#9??@?@??@@???F#G#H#I#J#K#L#MModerate#N&@@O$$~ $M@$$$$Laurene Stanners$United Kingdom origin$2$ )Intelligence Operator - Canadian Military $ A$ Positive$ $ $$$$$$$$$$$$$I'm always cold, more so than just my hands. It has to be nice and hot for me to be comfortable. It is not just that I feel cold, I am cold to the touch. My fingers always go a waxy yellow/white when they are cold.$$$I've never been diagnosed with immflammatory bowel disease as such, but I've had a problem since birth with my bowels. Most of my childhood I had constipation problems so much so that my parents had to physically help me go to the bathroom when I was a ch$+$"I believe it stopped about age 30.$ $!$"$#Between 25 - 27$$$%$&$'xIt may have been because of weight training as I lost a lot of body fat at that time, and thus it became more noticeable$(~ $)@$*$+ Unsuccessful$,$-$.$/$0$1Somewhat Successful$2$3$4$5 ORBITAL PROPS$6Three orbital props were inserted and then removed as they caused double vision. My left eye is no longer propped up yet I now have double vision. It was extremely unsuccessful, and only caused more problems. Carved off some of left lower jaw bone. It was$7 Unsuccessful$8I was suppose to have some ear carilege used to build up the inside of my left nostril so that I could actually get better oxyen intake, but it was never done. After the other disasterous surgery, I've never been keen for another surgeon to touch me.Z$9?@?@????@?F$G$H$I$J$K$L$MSevere$N&@@O%%~ %M@%%%% Jason Subt/%&Finnish-from mother Syrian-from father% Half syrianQ% HRemodel Houses and attending college, in hopes of an architecture degree % A% Positive% % %%%%%%%%%%%%%% %% %13% %!I wasn't taking part in any treatment because at the time there was none known. At least according to the doctors at the Mayo clinic in Houston Texas%"%#%$%%%&)%*%+%,%-%.%/%0%1%2%3%4%58Z%9???F%G%H%I%J%K%L %MMild%N@?O&&~ &O@&&&& Nicola Wyatt&White&&  Housewife & A& Negative& & &&&&&&&&&&&&&& &&!&maybe about 16 years old& /&!&Maybe the contraceptibe combined pill?&" &#26&$?&%&&&'After childbirth possibly when hormones are settling back into routine. When not on the pill. Noticed a dentation in my cheek bone area so went back on pill (and now fingers crossed) seems to have stopped.&(At times of stress ie bereavement, house move, I experience pain in the areas affected on my l.h side of face. Could this be a trigger?&)&*&+&,&-&.&/&0&1&2&3&4&58Z&9@@@?@?F&G&H&I&J&K&L&MModerate&N$@@O''~ 'P@'''' Shawn Fox'White/Caucasian'-' $Front Office Assistant/Dental Office '  ' ' '''''''''''''My hands do get very cold all the time. It seems like if I am sitting for a small period of time, they get that way, they also turn red, or sometimes a yellowish tint.'''Yes, my loss of hearing in my left ear. The Iritis this past winter kind of made me wonder where I got that from. I had Iritis in my Left eye. I also have a slight asthigmatism in my left eye. Sometimes,my left eye twitches, my right one does not.''I was about 17 or 18' '!My doctor said it should stop when my face stops growing, and I had my surgery when I was 18, it had seemed to have stopped at that point'"'#'$'% '&(~ ')@'*'+ Successful','-'.'/'0'1'2'3'4'5'6When I was about 11 Years old, I had a surgery on my left ear to repair a perferated ear drum. about 6 months after that surgery, I started loosing my hearing, then I started noticing a change in my facial features, such as the atrophy on my left side. Wh'7Somewhat Successful'8Z'9@@@??@?F'G'H'I'J'K'L'MModerate'N(@?O((~ (@P@((((Amber Lekay Covin(white - caucasion(( being a 4 year old kid ( A( Negative( ( (((((((((((((( (((( (!yI can not tell at this point what Amber's atrophy is doing. I do not see any visible differences than when she was three.("(#($(%(&)(*(+(,(-(.(/(0(1(2(3(4(58Z(9F(G(H(I(J(K(L (MMild(NO))~ )P@)))) Karen Feutz-)$1/2 Hungarian, 1/4 Irish, 1/4 German)) Administrative Asst )  ) ) )))))))))))))When I lived in the Midwestern portion of the U.S., Chicago, I always had cold hands and feet. I live in Arizona now and, at my age of 52, NOTHING is cold. Ha Ha))Sometimes, it seems like the left-side of my face/jaw gets "stuck" i.e. if I yawn or when I chew something hard, it feels like it sticks. But I've never been unable to fully open or close my mouth.)I have not been diagnosed but I think I have fibromyalgia. Everyday, my bones and my muscles ache. I have quite a bit of pain in the back of my neck, my wrists, my knees, my elbows; all the joints. I was tested for rheumatoid arthritis several years ago b)) Late teens) 5)!,Just seemed to stop as quickly as it started)")#)$)% )&')(It seems that the onset was at about age 9 and it stopped by age 16 or so. I started having surgery at age 14 so I don't know if that stopped the progress.~ ))4@)*)+ Unsuccessful),)- Successful).)/ Unsuccessful)0)1 Unsuccessful)2)3)4)5)6Had silicone injections with a silicone implant to take the place of the unsuccessful bone implat for left cheekbone. Silicone implant still in place and good.)7 Successful)8I had a series of silicone injections in 1982 consisting of between 50 - 100 injections each during 6 separate treatment dates. Initially I was elated at the results. I looked the closest to normal that I ever did. Now, I have a slight concave spot on lefZ)9????????F)G)H)I)J)K)L)MSevere)N@@O**~ *Q@**** Dianne Lennox* New Zealander** Nurse * O* Negative* * ************t*kThey seem colder than most people's, my feet suffer from the same problem. No colour changes have been seen**f*]I do have diverticulitis. Apart from one acute attack, it has not really caused any problems.**13-14* *!*"*#*$*%*&)***+*,*-*.*/*0*1*2*3*4*58Z*9???@F*G*H*I*J*K*L*MModerate*N@O++~ +@Q@++++ Robert Clarke'+Born England, Parents Jamaican+African American-+ $Financial Planner/Investment Advisor +  + + ++++++++++++++/+&I have muscle spasms from time to time++++ +!+"+#+$+% +&(~ +)@+*+++,+-+.+/Somewhat Successful+0+1Somewhat Successful+2+3+4+58Z+9?@?@@@??@F+G+H+I+J+K+L+MSevere+N@@O,,~ ,Q@,,,, Susan Niles<,3Irish, English, German, French, and American Indian,, School Teacher ,  , , ,,,,,,,,,,,,,,6,-Right perforated Temporomandibular Joint disc,Vertigo, two bouts of feeling like I was being pulled to the left while attempting to walk. I was given medication, beta balancer (?) and eventually went away after several weeks.,,Age 11, ,!,"$,#Age 3 and stopped at age 11,$,%,& INFECTION,'A possibility of having pneumonia prior to the onset of PRS and then moving from St. Louis, Missouri to Miami, Florida at age 3 1/2. A new environmental change.z,(qI lost the sight of my left eye at age 23. Eighteen months after the birth of my daughter. No changes since then.~ ,)?,*,+,,,-,.,/,0,1,2,3,4 ,5EYEa,6XStrabismus surgery of the left eye at age 48, 25 years after sight loss of the left eye.,7 Successful,8Z,9@@@?@@@?F,G,H,I,J,K,L ,MMild,N.@@O--~ -R@----Donn CammarataS-JHalf Italian, Irish,English, scottish,Dutch...A tiny bit of American india- - - -------------I have had some bowel problems. Mainly soft stools and I used to have alot of urgent diarhea before changing my eating habits. I had a colonoscopy and the doctor said everything looked fine. As far as the eyes, I have alot of skin problems, mainly in the -g-^Only the appearence of my chin now.............it is about a 1/4 inch higher on the left side.-Segmental nephritis as a teenager. Tonsilectomy as a child. Inguinal Hernia surgury within the last yr and a half. I fell on the back of my head as a child, suffered a concusion--- -!-"-#-$-%-&)-*-+-,---.-/-0-1-2-3-4 -57F-8=I was recently diagnosed and have not looked into surgery yetZ-9??@?@????????F-G-H-I-J-K-L -MMild-N @@O..~ .@R@....Sally VanRaemdonck1.(Caucasian- Irish, English,French, German.. Legal Assistant .  . . ................Joint pain Fatigue.. Late 20's. .!.".#.$.%.&).*.+.,.-.../.0.1.2.3.4.58Z.9F.G.H.I.J.K.L.MModerate.NO//~ /R@//// Corey Lemoine&/french- Canadian European Jew// student / 0/ Positive/ / ////////////// // /9/ P/!Gpossibly methotrexate injections ??? don't know if it would have anyway/" /#7/$/%/&)/*/+/,/-/.///0/1/2/3/4/58Z/9@F/G/H/I/J/K/L/MSevere/N@O00~ 0R@0000Diane0white00 stay at home mom 0 00 0 0 0000000000000For years I have noticed that my hands were always cold and would kind of look blue or purplish as well as certain parts of my face and lips when it was cold out. My one friend used to call me a smurf.000I have spine scoliosis,my left eye is slightly crossed but can control it(lazy eye) My vision in the left is 20/100 my right is 20/20 ans slightly far sighted. I don't have eyelashes on the bottom of my right eye.0 0170 0!0"0#0$0% 0&(~ 0)?0*0+Somewhat Successful0,0-0.0/0001020304 05708I had fat injected in my face taken from my stomach. It was fairly successful although only about 15% stayed and the rest was absorbed. I was going to have reconstructive sergury but found out I was pregnant and decided to forget it.I did have collegen inZ09@??@?????@F0G0H0I0J0K0L 0MMild0N"@@O11~ 1S@1111 Jodi Quelle1White11 Court Reporter 1  1 1 111111111111111Currently, my jaw is constantly aching. I often open and shut my mouth just to relieve the tightness. As far as "lock jaw", only when I was 16 (1986) did I have an episode of something similar. I had a terribly high fever and was very sick and my jaw just1Ever since birth, I was constantly ill with tonsillitis and colds, often losing my voice for all of winter. Finally, in 1995, I had my tonsils removed and have been fine since. In 1997, I went to the doctor for numbness in my feet. They had scheduled me f111 1!1"1#1$1% 1&'1(Smoking seems to exacerbate the problems and sensations. I quite smoking and may smoke just one occasionally when stressed. I run faithfully and lift weights and do toning exercises with some Yoga and sports. That seems to help a great deal as far as the ~ 1)@1*1+1,1-1.1/10111213141516My operations were unrelated to this disease. I just found out about this disease only 22 days ago and did not realize there were even courses of therapy, treatment or surgical procedures available. I have just begun my research regarding this. 178Z19?@@???@?F1G1H1I1J1K1L 1MMild1N&@?O22~ 2@S@2222Michel Laetitia2francaise (europeenne)22  infirmiere 2 A2 Positive2 2 222222222222I2@my fingers are becoming white (sometimes red) when its very cold2 2222 2!2" 2#302$2%2&STRESSC2':the stress (I was doing examens when it comes on the face) 2()2*2+2,2-2.2/2021222324258Z29@@?@???F2G2H2I2J2K2L2MSevere2N$@@O33~ 3S@333#3Madeleine de Rauville-RaalF3=White South African (English mother and South African father)3.3 %Advertising / Full time mother of two 3 O3 Negative3 3 333333333333333When my PRS was at its worst (in and around 1987 when I was 20 years of age), I would have muscle spasms/cramps in my jaw. My jaw would lock in a terribly painful muscular spasm (the muscles along the jaw and the whole cheek area would seem to lock/knot iA38No - nothing else - otherwise perfectly healthy and well3*3!28 (10 years after it had started3 3!3"53#,No, but it was at its worst from 1987 - 19903$3% 3&'f3(]No - to me it just had to run its natural course. Nothing helped speed it up or slow it down.~ 3)?3*3+ Unsuccessful3,3-3.3/303132333435 RESTYLANE36It's not surgical but a procedure (x3) whereby restylane and perlane products have been injected into the affected / depressed area under local anaesthetic. I think this has been good for me as mine is only a soft tissue problem ie bone is fine. We don't 37 Successful38Z39@??@@???@?@F3G3H3I3J3K3L3MModerate3N$@@O44~ 4S@4444 Kyla Meyer!4German, Turkish, African44 student 4  4 4 444444444444O4FI am thin and have always been told it is from inefficient circulation4O4Fnot exactly but ove the years I am able to open my mouth less and less,4#anorexia nervosa, sinus infections,444 4!4" 4#254$4%4&STRESS|4'sI don't know if it's related but the syptoms seemed to speed up during a time of unrelated extreme emotional stress 4()4*4+4,4-4.4/4041424344458Z49@?@?@???@F4G4H4I4J4K4L4M Very Mild4N"@@O55~ 5T@5555 Lorin Marlowe5White55  minor child 5 B5 Negative5 5 55555555555555525)difficulty falling asleep, staying asleep555 5!5" 5#85$5%5&)5*5+5,5-5.5/5051525354558Z59??@@@@@??@??F5G5H5I5J5K5L 5MMild5N*@"@O66~ 6@T@6666Adrienne Wilson!6New Zealand Maori/Pakeha6Maori6 University student 6 A6 Negative6 6 666666666666o6fIm very sensitive to the cold, my hands sometimes turn white/blue and if i get really cold i feel sick6 66 6156 6!6"6#6$6%6&)6*6+6,6-6.6/6061626364658Z69@?@&@??@?F6G6H6I6J6K6L6MModerate6N@,@O77~ 7T@7777 Mary Toledo7German77  IS-Technical 7  7 7 77777777777777.7%I do have spasms sometimes in my jaw.77 75-67 7!7"*7#!It started very aggressively at 37$7% 7&(~ 7)4@7*7+Somewhat Successful7,7- Unsuccessful7.7/Somewhat Successful7071 Successful72737475COSMETIC76I have had my nose straightened with the use of ear cartilege. Had my lower eyelid thickened a bit with some of the skin from my upper eyelid. Had my upper lip thickened with grafting from the lining of my mouth. I have probably forgotten some of them.77Somewhat Successful78Z79?????F7G7H7I7J7K7L7M Very Severe7N@?O88~ 8T@8888Natasha GeddieZ8QAustrian & Irish (biological father) French & Cherokee Indian (biological mother)8=8 4Sr. Litigation Paralegal, musician and music teacher 8 A8 Positive8 8 888888888888888As stated in Part I of the survey, a neurologist (Alan Naarden, M.D.) ordered an MRI of my jaw in January, which reflects severe degeneration of the jaw bones which he interprets as a severe case of TMJ. I have been referred to a dentist to see about gett8I am being treated for bi-polar manic depression. I have also been treated for marijuana dependence. I was initially diagnosed with severe depression in 1991; I did not know until last summer that feeling like I am on the top of the world with endless ene8&814 - started then and stopped8 8!8" 8#378$8% 8&(~ 8)?8*8+Somewhat Successful8,8-8.8/Somewhat Successful8081828384 85687Somewhat Successful88Recovery is taking A LOT longer than the surgeon said it would. The surgery did take longer and was more extensive than he originally planned, also. He said he had to 're-do' it after he'd done it the first time, because the flesh wasn't the proper color.Z89??@???@@@?F8G8H8I8J8K8L 8MMild8N"@@O99~ 9U@9999 Hyunjin Lee9Korean9Korean9  researcher 9 A9 Positive9 9 99999999999999 99 9249 9!9" 9#269$9%9&STRESS69'-I think.. Fatigue and stress make it speed up9(~ 9)?9*9+Somewhat Successful9,9-9.9/9091929394958Z99??@?@@???F9G9H9I9J9K9L9MSevere9N"@@O::~ :@U@::::Petra R. Medina:Spanish-American:!: Administrative Assistant : B: : : :::::::::::::: :: :10?: :!:":#:$:%:&q:'hI really didn't pay attention to how long it took, how old I was, or whether it stopped or speeded up???:(~ :)@:*:+:,:-Somewhat Successful:.:/:0:1:2:3:4 :5FOAM:6piece of foam shaped to fit over my right side by my ear and jawline at age 18 in addition to fatty tissue taken from my stomach to fill in around nose and cheek-bone down:7 Unsuccessful:8eventually the "piece of foam" has shrunk and broken up and I think is still in by my jaw someplace; it seems to be hanging in the throat area immediately below the jaw kind of in a lump. I guess I just forget it's there and have never thought about havinZ:9??@?????F:G:H:I:J:K:L:MSevere:N @?O;;~ ;U@;;;;Craig Mitchell ;; Software Engineer ;  ; ; ;;;;;;;;;;;;;; ;; ;16; ;!;";#;$;% ;&(~ ;)@;*;+Somewhat Successful;,;-;.;/;0;1;2;3;4;5s;6jHad excesive fat after graft (expecting some absorption) and went for a type of lipo to remove excess fat.;7Somewhat Successful;8Z;9?????@F;G;H;I;J;K;L;MModerate;N@@O<<~ <V@<<<<Rose M. Goodman<Germany / Irish<&< sales - construction industry <  < < <<<<<<<<<<<<<<<Sometimes it tightens up so much in the afflicted area that you can see the tension and it hurts!I have to try and stretch it just like a cramp in any other muscle.<</<&based on photos, it was active 5 years< <!<"<#<$<% <&'<(Was a healthy child - first noticed at age 13 and it progressed so slowly that as first the damage was not noticible to my family. Per photos, seemed to have stopped at age 18~ <)@<*<+ Successful<,<-<.</<0<1<2<3<4<5LASER<6Surface laser to smooth out the deep furrows. It did make a difference, however, the part where the muscle still shows (chin closest to the center)is noticible when I move my mouth. In most people this area has "padding" but mine does not so you see the m<7Somewhat Successful<8Z<9???F<G<H<I<J<K<L <MMild<N@O==~ =V@====Beth McAllister=white== child =  = = ===============[=RPsoriasis (on scalp). That's what we thought caused her bald spot a long time ago.=,=#we think it is stopping now - at 10= =!="N=#ELast year at age 9 was a dramatic year of development of this disease=$=% =&'=(Just a growth spurt?=)=*=+=,=-=.=/=0=1=2=3=4=58Z=9?????F=G=H=I=J=K=L=MModerate=N@?O>>~ >V@>>>>D.Garvin!>scottish,english descent>>  hairstylis > A> > > >>>>>>>>>>>>>> >> >28> z>!qi had a dermis graph inserted into my cheek and chin. i have not noticed anything more and that was 14 years ago.>"T>#Ki had 2 pregnancies between age 23 and 26 which is when it was at its worse>$>%>&>'it could have been the pregnancies or maybe it was the timing of having it for so long and it had just about burned itself out i am not sure.>(~ >)@>*>+ Unsuccessful>,>- Unsuccessful>.>/>0>1>2>3>4>5k>6bi had a silicone prothesis inserted but i had it removed later because it looked and felt strange.>7 Unsuccessful>8Z>9???@?F>G>H>I>J>K>L >MMild>N@O??~ ?W@???? Mary E. Lydon? Mostly Irish? ? cook ? O? ? ? ?????????????The first time I diagnosed way back in 1976, the plastic surgeon had me see an opthalmologist, he told me that I had debris in my right eye. He gave me steroid drops, never saw him again. When I was 30, 11 years later, I needed to wear glasses, my eye doc?X?OOccasionally the muscles under my jaw will cramp, it is just a momentary thing.x?oI had two grand mal seizures when I was 44. I mistakenly called them petit mal on the first part of the survey.??? q?!hThe atrophy seemed to occur almost overnight when I was 15, it has not changed significantly since then.?"?#?$?% ?&(~ ?)??*?+?,?- Successful?.?/?0?1?2?3?4?5?6I recieved 11cc of liquid silicone in my cheek and chin in 1974. Dr. Joseph Murray of Peter Bent Brigham Hospital in Boston MA (now known as Brigham and Womens Hospital), was participating in a goverment sanctioned test on silicone injections. He was the ?7 Successful?8Z?9?@@???F?G?H?I?J?K?L ?MMild?N@@ODNl" !R.:_ Q4'g@PT0APBPCPDPEPFPGPHPIP:JP$KP$LP$MPNP$OPPP$QP$$RP{SPTPUP$VPWPXP$YP{ZP$[Pz0\P]P]^P_P@@~ @@W@@@@@Siomara M. Laguna@Central American@"@ Preschool Teacher/Student @  @ @ @@@@@@@@@@@@D@;My hands are always cold. They are never clammy, just cold.@ @@@@ i@!`I had reconstructive surgery, so I am not sure if it ever slowed down because I have an implant.@" @#19@$@% @&(~ @) @@*@+Somewhat Successful@,@-@.@/@0@1Somewhat Successful@2@3@4 @5EYE@6I have had cranial reconstruction and around the orbit of the eye. The first surgery was not successful because the orbit made my eye shift and made my eye look worse than before. I have also had to have eyelid surgery because there was too much scar tiss@7 Unsuccessful@8Z@9?????@??F@G@H@I@J@K@L@MSevere@N @?OAA~ AW@AAAASerene Oh Hwei FernACHINESEAChineseA NURSE A BA PositiveA A AAAAAAAAAAAA6A-HAVE SWEATY PALMS(NOT SEVERE), AND COLD HANDSAAFEEL TIGHTNESS OF THE LEFT JAW. SOMETIMES WHEN I OPEN MY MOUTH, I CAN FEEL THE JAW MOVING UP AND DOWN (MECHANICALLY). COULD NOT OPEN MY MOUTH BUT RELIEVE AFTER TAKING PHENYTOIN AND ANAREXAI'm Serene Oh from Singapore. I think I've missed out something which may or may not be relevant. I had a lipoma removed in late 1997. It's located near my right scapular. Guess that's about all. Really hope to hear from you soon.AAA A!A"A#A$A% A&'A(I DON'T SEE THE SPEEDING OR STOPPING, BUT I OBSERVED THAT I'VE INCREASING HEADACHE AND TIGHTNESS OF MY JAW WHEN I'M STRESS, OR EMOTIONALLY CHARGED, OR SMILE/LAUGH EXCESSIVELYA)A*A+A,A-A.A/A0A1A2A3A4A58ZA9@????@FAGAHAIAJAKAL AMMildAN@@OBB~ BW@BBBB Natalie BruBHispanicBB Sales Associate B  B B BBBBBBBBBBBBBB BBBB B!B"B#B$B% B&(~ B)?B*B+ UnsuccessfulB,B-B.B/B0B1 UnsuccessfulB2B3B4 B56B7 UnsuccessfulYB8PThese type of surgery only lasted a couple of months, now my symptoms are worse.ZB9@????@????FBGBHBIBJBKBLBMModerateBN@@OCC~ CX@CCCC Mary CampC CaucasianC3C *Stay at home Mother, formally a journalistC C PositiveC C CCCCCCCCCCCCCCCSometimes I find it difficult to chew on the left side. This is not due to pain or stiffness but just a general lack of strength/mobility.CCC13 or 14C 7C!.Onset of menstruation and reaching full growthC"C#late 20sC$>C%C&C'I believe pregnancy reactivated the atrophy, but am not absolutely certain of that, because the area affected (chin) had fat grafts in the 1970s and it has also occurred to me that what I am seeing is a deterioration of those grafts and a reverting back tC(~ C)@C*C+Somewhat SuccessfulC,C- UnsuccessfulC.C/C0C1C2C3C4C58ZC9?????FCGCHCICJCKCLCMSevereCN@@ODD~ D@X@DDDD Diana MannDCockneyDD Garden Designer D AD PositiveD D DDDDDDDDDDDDDD#DCan't open mouth very wideDProper Iritis - goes to Moorfield. Depression after parents died (not to do with face). Gallbladder, Hysterectomy, general ill health (seems unrelated)D D11D D!D"D#D$D% D&'D(Didn't notice anything~ D)9@D*D+Somewhat SuccessfulD,D-D.D/Somewhat SuccessfulD0D1D2D3D4D5D6Right ear stuck out (pinned back). Tried to alter shape of eye in one operation. Arm to face pedicle in 20's. More embarassed by arm and abdominal scars. Rhinoplasty x 3 D78ZD9??@@?FDGDHDIDJDKDLDMSevereDN@@OEE~ EX@EEE EMartha M. Hollingsworth/E&Irish, Indian, German, Italian mixtureEE dental hygienist E OE PositiveE E EEEEEEEEEEEE|EsI don't believe I have color change but frequently I have cold fingers especiallly the fifth fingers on both hands.EEA couple of times in my early twenties I had what was thought to be a TMJ dysfunction. I clinch my teeth now. Also, I appear to have somewhat short root structure of my teeth on radiographs.EEEE E!E"E#E$E% E&(~ E)@E*E+E,E- UnsuccessfulE.E/Somewhat SuccessfulE0E1E2E3E4E58ZE9@???????FEGEHEIEJEKEL EMMildEN@@OFF~ FX@FFFFPatricia Del MercadoF caucasianFF Registered Nurse F AF PositiveF F FFFFFFFFFFFFFFFSLight malocclusionUFLPolymyositis resulting from an anti-depressant "Serzone" Anxiety. Scoliosis.FFF F!F"F#F$F% F&(~ F)@F*F+Somewhat SuccessfulF,F-F.F/F0F1F2F3F4F5GORE TEX,F6#gore-tex implant and cheek implantsF7Somewhat SuccessfulF8ZF9@?@@@@??@???FFGFHFIFJFKFLFMModerateFN,@@OGG~ GY@GGGGKathy S. McCormickGIrish AmericanG&G Nuclear Medicine TechnologistG G PositiveG G GGGGGGGGGGGGGI tend to be cold all over. I have plenty of "padding" (I'm overweight), but I still seem to always be cold. Occasionally when I get extremely cold extremities, my hands seem to appear whiteGGI've had TMJ. On occasions when I yawn, my jaw would lock open. I have since learned to yawn "off center" to avoid having my jaw lock.GI have very severe allergies to mold, fungus, dust, smoke, pollen, grass and trees - - - mostly mother nature. I've been treated with oral meds (currently 10mg QD Zyrtec and started taking allergy shot 1 year ago. My allergist, Dr. Gailen Marshall, said hGGG G!G"G#G$G% G&'G(It seems as though I did not develop PRS until I was about 40 to 41 years old. It seems to have progressed (very slowly) since then and since it is slow, I can not tell if the Plaquenil has made any difference.G)G*G+G,G-G.G/G0G1G2G3G4G58ZG9?FGGGHGIGJGKGL GMMildGN?OHH~ H?HHHHTheresa Hildebrand+H"American of Irish & German descentHH  Library Clerk H BH PositiveH H HHHHHHHHHHHHHH HHHH H!H" H#NoH$H% H&'H(Jon, this is a tough question because it is hard to tell whether facial changes take place because of the natural aging process or from the atropy advancing.H)H*H+H,H-H.H/H0H1H2H3H4H58ZH9@?@???FHGHHHIHJHKHLHMModerateHN@?OII~ I@IIIIJanette NorrisIAustralian-WhiteII Student I OI I I IIIIIIIIIIIIIIIAI8Petit mal when I was younger. Also I suffer from excma.II 16 years oldI I!I"I# 12 years oldI$I% I&(~ I)?I*I+Somewhat SuccessfulI,I-I.I/I0I1 SuccessfulI2I3I4 I57\I8SI had to have artificial bone inserted as my skull was thin in parts due to RombergZI9@@@@??@??FIGIHIIIJIKILIMModerateIN(@@OJJ~ J@JJJJ Rita Bietry+J"American born, parents from PolandJJ Medical office nurse J BJ PositiveJ J JJJJJJJJJJJJLJCfingers and toes become cold and numb quite easily when not active.JJThe jaw will become lodged in a certain position. This does not happen often but it does happen suddenly. I have learned to just relax myself and my jaw and it will relax the muscles.Ji suffer from headaches both sinus, tension and migraine. It seems I have a headache of some degree every day. Most of them are treatable with sinus medicine and motrin. Occassionaly the migraine needs Medrin.I also have a sensitivity to flickering lightsJJ 40 years oldJ J!J"J# 32years oldJ$?J%J&J'zIt started after my second pregnancy. I noticed a darking spot on my right eye develop before the facial changes occurred.J(~ J)@J*J+Somewhat SuccessfulJ,J-J.J/J0J1J2J3J4J5J6I had one fat implant operation that was somewhat successful except that the implant 'took' a little off the mark. I have also had two auto fat injections that did not last very long at all. The fat was reabsorbed quite rapidly. J78ZJ9??@?@?@???@@?FJGJHJIJJJKJLJMModerateJN&@ @OKK~ K@KKKKElizabeth TaylorKenglish/scottishKK customer service rep K BK NegativeK K KKKKKKKKKKKKKK KKKabout 6 or 7 i thinkK K!K" K#NoK$K% K&(~ K)6@K*K+ UnsuccessfulK,K-K.K/ UnsuccessfulK0K1 SuccessfulK2K3K4K58ZK9@@??@?@?@?@??@FKGKHKIKJKKKLKMSevereKN*@"@OLL~ L@LLLLTammie D. StammersL caucasian L  L BL NegativeL L LLLLLLLLLLLLLL LLLL L!L"L# early 20'sL$L% L&(~ L)@L*L+Somewhat SuccessfulL,L-L.L/ SuccessfulL0L1L2L3L4L58ZL9??@??@??@?FLGLHLILJLKLLLMModerateLN@@OMM~ M@MMMM Nicole TullyMIrish, ScottishMM student M  M M MMMMMMMMMMMMMMM9M0Severe sinus infections on affected side of faceMMM M!M"M#M$M%M&)M*M+M,M-M.M/M0M1M2M3M4M58ZM9???@FMGMHMIMJMKML MMMildMN@ONN~ N@NNNN Susan EmeryJNACaucasian (both parents & all grandparents etc. are from England)NN Call Centre managerN N NegativeN N NNNNNNNNNNNNNMy toes often loose their feeling and go purple or extremely white (like there is no blood getting to them). Both my GP and accupuncturist said I have Raynauds phenomenon / disease in a mild form (I believe this is the loss of circulation to extremities. NoNfI get really sore spots at the angel my jaw opens and closes. Sometimes so sore I can't even touch it.NN Nearly 30's. I am now 37N N!N"N#N$N%N&)N*N+N,N-N.N/N0N1N2N3N4N5OP ON GOOD SIDEN6I had a plastic surgeon who felt it was safer and more feasible to make the healthy side look more similar to the unhealthy side. He did a complete facelift and took fat away from the healthy eye lid to give more of an even appearance. So it was a cut froN7Somewhat SuccessfulN8I still have a fairly flat dent on my left cheek where all I see is bone. Skin is very thin on that cheek bone. Left eye is more sunken than right eye.ZN9@@@?@@?FNGNHNINJNKNL NMMildNN0@?OOO~ O @OOOO Clare FlaxmanOenglishOO  bookkeeper O  O O OOOOOOOOOOOOOOuOlMy mouth doesn't open very far .... the jaw doesn't stretch much. also my lower right teeth are falling out.pOgI am on medicine for depression. Last year my 46 year old husband died. we were married for two months.OOabout 35 perhaps.O O!O" O#32O$>O%O&0O''being pregnant I feel really sped it upO(when I'm tired it is more obvious. When I[m very stressed it seems to speed up. I think it went active again last year when my husband died.O)O*O+O,O-O.O/O0O1O2O3O4O58ZO9@@@???@??FOGOHOIOJOKOLOMSevereON&@@OPP~ P"@PPPP Angela BrightPwhiteP P RN P AP PositiveP P PPPPPPPPPPPPPP PP P28P P!P"P#P$P% P&(~ P)@P*P+ UnsuccessfulP,P-P.P/P0P1P2P3P4P58ZP9@??????FPGPHPIPJPKPLPMModeratePN @OQQ~ Q$@QQQQ Manuel PueblaQLatinQHispanicQ Student Q AQ PositiveQ Q QQQQQQQQQQQQQQQSometimes my jaw is locked and it's a lot of strain as I feel there is some kind of cramp in the muscles of my neck and below my toungue. Usually happens when I'm nervous or in a stress situation; also in cold environments.GQ>When I was a toddler I had bronquitis (is it spelt that way?).Q@Q7No, I am not even sure if it stopped but I guess it didQ Q!The athrophy became more and more evident as the rest of my body developed normally, but as far as I'm concerned it stopped in my early teens (about 14 years old).Q"Q#Q$Q%Q&)Q*Q+Q,Q-Q.Q/Q0Q1Q2Q3Q4Q58ZQ9??@?@@?@?FQGQHQIQJQKQLQMSevereQN$@@ORR~ R&@RRRR Marilyn NealR CaucasianRR  Housewife R OR PositiveR R RRRRRRRRRRRRRRRI have muscle spasms in my Romberg's affected jaw muscle. When I was diagnosed at age 16, the spasms were quite severe. As I have grown older, the spasms are still there but not to the same degree. Now I get quick little spasms that cause me to bite the iRI have tissue loss on my side above my waist on the Rombergs affected side. It is a deep crease there. It has not caused me any medical problems that I know of.R*R!I feel it stopped in my late 20'sR R!My atrophy took most of the tissue on my right side cheek and chin. I also have bone loss in my forehead and temple areas and around my eye. My atrophy was a very slow process over many years. It started around the age of 9 and had burned itself out in myR"R#R$R% R&(~ R)@R*R+ SuccessfulR,R-R.R/ SuccessfulR0R1 SuccessfulR2R3R4 R57RR8II do not believe it is possible for surgeons to give us perfect symmetry.ZR9@?@@?@@@??FRGRHRIRJRKRLRM Very SevereRN(@@OSS~ S*@SSSSAndrea M. RodriguezSwhiteS8S /Production Manager for Screen Printing Division S  S S SSSSSSSSSSSS_SVI think it's because I'm a smoker. My dermatologist does not think that it's Raynauds.SS~Had TMJ for over 3 years now. My dentist, orthodontist and oral surgeon do not recommend anything other than wearing a splint.SLet's see, where do I start. Allergies is first and foremost. I have seen and opthamologist because of a pseudo tumor behind my left eye. (The affected side) I also had a problem earlier this year due to many headaches. For the most part, I get sick reallS S17S S!S"S# around 19S$S%S&STRESSSS'JPossibly stress, I had just left college and took on a 40 hour a week job. S()S*S+S,S-S.S/S0S1S2S3S4S58ZS9????@??@?@??FSGSHSISJSKSLSMSevereSN @@OTT~ T,@TTTTJo-Ann D'AngeloTItalian AmericanT.T %International Compensation Specialist T  T T TTTTTTTTTTTTTTTTI did see a US recognized immunologist who had a interest in Parry Rombergs and she did extensive blood work. She explained that my blood work showed signs of immunologic disorders but not enough that I would be fully diagnosed with one. I usually have a T T24T T!T" T#21T$>T%T&[T'RIt may have gotten worse during a pregnancy but I honestly cannot say for certain. T()T*T+T,T-Somewhat SuccessfulT.T/T0T1T2T3T4T58ZT9@??FTGTHTITJTKTLTMModerateTN@OUU~ U.@UUUU Pam UnReinUWhiteUU Legal Secretary U OU PositiveU U UUUUUUUUUUUUUI was diagnoised with Raynauds phen. about one year and extreme tiredness before the fat on the right side of my face almost totally disappeared.UUI would get muscle spasms under the right jaw since I was 16 years old and I still have them on occasion, I am 39. When the muscle would relax the jaw would not feel so tight, it would come on when yawning widely or sometimes chewing foods.UAt age 8 I had an ulcer, 11-colitis, at 15-I had a fatty tumor (benign) removed from the left side of my chin, almost immediately after that surgery the rt. side of my chin did not look right, I went through 2 more surgeries from a plastic surgeon at age UUnot really, because the face changes so much from intake of salt to hormores that unless it is a major change it is hard to tellU U!U" U#23U$?U%U&U'after the birth of my second child and I had lost the birth weight, the fat on rt. side of face disappeared also, I am 5-4 and weight 98 lbs after the birth of my sons I weight maybe 95 lbs.U(not that I know ofU)U*U+ SuccessfulU,U-U.U/U0U1U2U3U4U5U6I do think that at 19 when I had all my wisdom teeth taken out by inpatient surgery I did notice a change in the rt. side of face.U7 SuccessfulU8ZU9?@??@@??FUGUHUIUJUKULUMModerateUN&@?OVV~ V0@VVVV Silvia MolerVHispanicVHispanicV Microbiologist V OV NegativeV V VVVVVVVVVVVVV{Sometimes my hands and feet get very cold. At night I have to sleep with socks so my feet don't get cold and become purple.VVFV=Excesive swetting from my armpits. Back problems (scoliosis).VVV V!V"V#V$V% V&(~ V)@V*V+Somewhat SuccessfulV,V-V.V/V0V1 UnsuccessfulV2V3V4V5ALLODERMSV6JAlloderm in 1999. It helped a lot and the procedure was not to complicatedV7 SuccessfulV8ZV9@@@????????FVGVHVIVJVKVLVMModerateVN$@@OWW~ W1@WWWW Tom SabelWWhiteWW  Social worker W OW PositiveW W WWWWWWWWWWWWWI have the scleroderma from Rombergs on the left side of my face. I have been diagnosed with colitus, depression,and possibly thyroid trouble when Iwas very youngWWI use to have the spaams where the area under my jaw on the affected side of my face would get knotted up and I had trouble opening my mouth. This problem has disappeared since I began to take Celexa and Buspar.WWW38-39 I think.W W!W"W#W$W%W&)W*W+W,W-W.W/W0W1W2W3W4W58ZW9@??@?@??@???FWGWHWIWJWKWLWMModerateWN(@@OXX~ X2@XXXXSusan L. SpieseXgerman/english descentXX rural letter carrier X OX PositiveX X XXXXXXXXXXXXXXXCan't remember what the doctor called it but the joint is not right on the romberg's side of my face. It gets sore sometimes & I cannot fully open my mouth without painsXjfibro-cystic breast condition had 1/2 my thyroid removed due to tumor...needle biopsy showed hurthle cellsXX late 20'sX X!X"X#X$X%X&)X*X+X,X-X.X/X0X1X2X3X4X58ZX9@????????@FXGXHXIXJXKXL XMMildXN@@OYY~ Y3@YYYYJane Valerie SandallQYHBritish (Irish/Scottish) caucasian (is that the correct spelling !!!???)YY Computer SystemsY Y NegativeY Y YYYYYYYYYYYYYYYY{miscarriages and premature birth of baby at 26 weeks which died after 9 days. i have not been successful at having childrenYY pre-teensY Y!Y"Y#Y$Y% Y&(~ Y)?Y*Y+Y,Y- UnsuccessfulY.Y/Y0Y1Y2Y3Y4Y5Y6After a series of silicone injections over months, I had to have 1 operation to try to drain out silicone that was previously injected but did not stay in the Rombergs areas of face. It moved to areas which had softer tissue. the Rombergs areas had tougheY7 UnsuccessfulY8ZY9FYGYHYIYJYKYLYMModerateYNOZZ~ Z@Y@ZZZZ Julie BackeYZP1/4 Scottish & 1/4 Swedish - the rest is a Heinz 57 mix of welsh/german and moreZZ Corporate ParalegalZ Z NegativeZ Z ZZZZZZZZZZZZZZZ`ZWHave deveoped allergies in recent years. Sinus infections on left side. Bowel problems.ZZZ Z!Z"Z#Z$Z%Z&)Z*Z+Z,Z-Z.Z/Z0Z1Z2Z3Z4Z58ZZ9??@?@???@?@FZGZHZIZJZKZLZMModerateZN&@@O[[~ [Z@[[[[Pam Kerr (for Nikki)[White[ [ [ [[[[[[[[[[[[[[ [[[[ [![" [#9[$[%[&)[*[+[,[-[.[/[0[1[2[3[4*[5F[G[H[I[J[K[L[M Very Mild [NO\\~ \[@\\\(\Annette Marie (Halladay) Morris<\3French, Irish, Belguim, French Candain and American\2\ )Sales Clerk and Full time college Student \ A\ Positive\ \ \\\\\\\\\\\\\\0\'The doctors have diagniosed me with TMJ\\\ not sure,\ \!\"\#\$\% \&(~ \)@\*\+ Unsuccessful\,\-\.\/\0\1\2\3\4\5RECONSTRUCTIVE\6vthey put in plates, to build up the bone, one across the cheek (under the eye) and one across the jaw and on the chin.\7Somewhat Successful\8The lipo, that was inserted into the cheek to puff it out, didnt take in the frist surgery and became infected and drain out it after the second.Z\9?@@@??@F\G\H\I\J\K\L\MModerate\N&@?O]]~ ]@[@]]]] Teresa BurksN]EI have Scottish, English, German, Irish and Cherokee Indian ancestry.]] Insurance adjuster ] O] Positive] ] ]]]]]]]]]]]]]] ]]]] G]!>I have alot of surgery, so I can't tell if it has slowed down.]"]#]$]% ]&(~ ])1@]*]+Somewhat Successful],]-].]/Somewhat Successful]0]1]2]3]4 ]57#]8It was an awful experienceZ]9@@@@@@@?@@?F]G]H]I]J]K]L]M Very Severe]N(@(@O^^~ ^[@^^^^Les Bienkiewicz^Polish^5^ ,ex Army officer (22 yrs); now public servant ^ A^ Positive^ ^ ^^^^^^^^^^^^^^^^High blood pressure.^^mid 20s^ ^!^"^#^$^% ^&(~ ^)@^*^+ Successful^,^-Somewhat Successful^.^/ Successful^0^1^2^3^4 ^56^7Somewhat Successful^8Z^9???????F^G^H^I^J^K^L^MSevere^N@@O__~ _[@____Sean William Price_white north american__ denta lab technician _  _ _ ____________8_/only when iget very cold legs, hands get purple_G_>sometimes if i am chewing gum it locks up and also feel spasms____ _!_"1_#(no,most damage was done in earlier years_$_%_&)_*_+_,_-_._/_0_1_2_3_4 _57^_8Ui am thinking of micro-surgery, i have saw many people do very well with this surgeryZ_9@?????????F_G_H_I_J_K_L_MModerate_N@@ODla(J)9=ug^ mO7`PT0aPbPcPdPePfPgPhPiP:jP$kP$lP$mPnP$oPpP$qP$$rP{sPtPuP$vPwPxP$yP{zP${Pz0|P}P]~PP``~ `\@````yvonne demarino'`french/italian/american indian`` plant pathologist ` O` Positive` ` ````````````T`KNo color change, but I am often cold in my extremities, feet hands and nose```As a preteen I experienced a time (weeks) when I had joint pains and woke up sore. I went to a doctor at that time, but no diagnosis was made. If I get sick (which is infrequent) it seems to settle in my chest. I used to smoke and had bronchitis. I was to``` [`!RIt is so difficult to tell, I was undiagnosed for so many years I just ignored it.`"`#In my 30's. I don't know if it speeded up or it was because I married a man 6'4" and he told me it was worsening as he was always looking down at my head`$`%`&`'How can I know, but I do believe it's hormonally related. I feel it is increasing now and that hormonally I feel like I am having my last "hurrah" before menopause.&`(None of this is quantitative.`)`*`+`,`-`.`/`0`1`2`3`4`5`6My "coup de sabre" is only on my head and is covered by my hair. It has just reached my forehead in one spot and I would consider surgery if it crossed my face. `78Z`9?@??F`G`H`I`J`K`L`M Very Mild`N@Oaa~ a@\@aaaaKaren Hamiltona Caucasianaa Registered Nurse a Ba Positivea a aaaaaaaaaaaaaaaMy jaw does not open very far and if made to at the denist office then it is very painful and the pain will last for days. Chewing gum also can hurt my jawaI think I listed everything on the last page because I do not know what is relevant and what is not. I just wanted to say for the last question on rating my face. I rated it severebecause of what I looked like as a child. The surgeries have helped some anaaa a!Stopping the pain seems to help it some but I cannot really say that it has stopped or slowed down because the degeneration has been ocurring my whole life, even after the reconstructive surgery my face has always been doing this.a"-a#$as a toddler and around 29 years olda$a%a&a'Yes pain seems to make it speed up. I was told as a child that I probably could not have children and so far I have never gotten pregnant.a(All I can think of is that when I was younger I did smoke some pot and I tried cocaine and it seemed to make it worse. I am embarrassed to admit this but I figure you should know all. But yet I do have to say that smoking the pot did help with the pain, b~ a)@a*a+Somewhat Successfula,a-a.a/a0a1a2a3a4a5a6I had an inguinal hernia as a child but I do not think that was relevant to this. I did refuse the silicone injections as a child. I am glad now because of the ramifications it has had on others. I was also offered the bone graft but turned that down. I la7a8I do not have health insurance right now and have not for years and the cost of the care I have received has been tremedous. I have been unable to work for several years due to the pain and yet so far I have not really found any doctor that has been of anZa9@@@?@?@@@?@@?FaGaHaIaJaKaLaMSevereaN.@$@Obb~ b\@bbbbKathleen Clift'bMother- French / Father-Germanb6b -Owner/Vice President - Transportation Company b Ab Negativeb b bbbbbbbbbbbbbbbMy jaw has locked peiodically since I was about 10 years old. I still can not open my mouth wide enough to eat apples or a hamburger. I had braces on my teeth from the time I was 12 until I was 14. This seemed to escalate the jaw problem. Several times myb}Xrays showed that part of the bone on the right side of my chin was missing when I was 16 years old. I have Stenosis - L4 L5.bbb b!b"b# 18 years oldb$b%b&STRESSub'lStress seemed to make it speed up. I had 5 stressful pregnancies and started my own business. Lots of stressb(~ b)@b*b+Somewhat Successfulb,b- Unsuccessfulb.b/b0b1b2b3b4 b56b7 Successfulb8The silicone injections changed and damaged some of my features and the operations made me look better. The fat from the injections dissolved within 6 months. I am very lucky. Makeup covers up most of my faults. My PRS seems to be very mild compared to otZb9???@FbGbHbIbJbKbL bMMildbN@?Occ~ c\@cccc Nickie Snowc Caucasioncc TV News producer c  c c cccccccccccccccAfter my first reconstructive surgery my jaw started to crack when I opened it too wide but is it better now. I only get lock jaw during times of stress.cI have patches of numbness all over my body--predominantly on the right side but a few little spots on the left side. I have one large chunck of numbness on my upper right thigh. In the areas of numbness, no body hair grows.c.c%I believed it stopped around 23 or 24c c!c"5c#,it rapidly sped up 18-22yrs and then stoppedc$c%c&STRESSc'I can't be sure, but I partied a lot in college and that's when the atrophy really began to become pronounced. I lost about 30 lbs and drank college levels (that's a lot) of alcohol. Some how I think that the alcohol and lack of sleep contributed to poor c(~ c)@c*c+Somewhat Successfulc,c-c.c/Somewhat Successfulc0c1Somewhat Successfulc2c3c4c58Zc9@@????FcGcHcIcJcKcLcMModeratecN@?Odd~ d]@ddd5d,Liz Taylor (from USA) - not elizabeth taylor,d#swedish, scottish, egyptian, frenchd?d 6research coordinator, dietitian, exercise physiologist d Ad Negatived d dddddddddddd'din the winter only, cold handsdLdCused to spasm and stay locked, would have to wait and then pry opendddd d!d"d#d$d% d&'Cd(:i don't think it ever stopped with me, just keeps going on~ d)?d*d+Somewhat Successfuld,d-d.d/d0d1d2d3d4 d57bd8Yinitially the fat graft worked well but since the disease continued it ate up all the fatZd9?@@?????@FdGdHdIdJdKdLdMSeveredN"@@Oee~ e@]@eeeeL. Kellye Irish/ Germanee student e Oe Positivee e eeeeeeeeeeeeee eee 6-7 years olde e!e"e#e$e%e&e'The Romberg's stopped or seemed to stop for about 5 years. But we are not sure beacause it is a very mild case and very slow moving. just before it restarted my daughter hit her chin a couple times by falling. She is a dancer. e()e*e+e,e-e.e/e0e1e2e3e4e58Ze9??FeGeHeIeJeKeLeM Very MildeN@Off~ f]@ffffDenise H.W. Eisenberg f!f student w/ part time job f Af Positivef f ffffffffffffffffAt one poit, i had been really stressed and uptight while in a fight with a family member and my right arm began to shake or spasm. It didnt last long. We went to a neurologist and he said in extreme cases that can happen to any one. But in any case we wef f16f f!f"f#f$f% f&(~ f)?f*f+Somewhat Successfulf,f-f.f/f0f1f2f3f4f5f6in the same surgery as the fat graph i had an implant put in. my mother and i arent sure exactly what it is called but it is artificail and the name of it has 3 letters and it starts with an "H".f7 Successfulf8today is January 15, you recently called me to finish this half of the survey. i had my 1st and only (so far) surgery on Oct24 or 25. i had a fat graph from my abdomen to my middle cheek and the implant implanted inmy upper cheek to replace my cheek bone.Zf9@??@????@?@FfGfHfIfJfKfLfMModeratefN&@@Ogg~ g^@ggggAmanda Bolingergwhiteg#g certifed nursing assistant g Ag g g gggggggggggg.g%My hands get blotchy when there cold.g gg g11g g!g"g#g$g% g&(~ g)@g*g+g,g- Unsuccessfulg.g/g0g1 Successfulg2g3g4g52g6)I've had a silicone implant under my eye.g7 Unsuccessfulg8Zg9??@???FgGgHgIgJgKgLgMSeveregN@Ohh~ h@^@hhh2h)Kiara Higgins Mother Colleen doing surveyhaustralia and englishh h h hhhhhhhhhhhhhhhhCoeliac diseaseh h4h ph!gTreatment seems to have halted most of kiaras atrophy but as she is growing it is hard to tell how muchh"h#h$h% h&(~ h)?h*h+h,h-h.h/h0h1h2h3h4h58Zh9???FhGhHhIhJhKhLhMSeverehN?@Oii~ i^@iiiiSylvia Hajdukovici Slovenianii  housewife i Oi Positivei i iiiiiiiiiiii!iHands and feet very coldi3i*Cant open wide extrodinary pain in the jaw*i!Right breast as mentioned earlieri i30i i!Electronic treatmentsi"i#i$Ai%i&i'second pregnancyi(~ i)@i*i+ Successfuli,i-i.i/i0i1i2i3i4i5i6 tissue grafti7 Successfuli8Zi9?@???FiGiHiIiJiKiLiM Very SevereiN@?Ojj~ j^@jjjj Kristi Davisjfrenchjj administrative j Oj j j jjjjjjjjjjjjQjHMy hands (and usually my feet) are always cold, even when it's warm out.jjI get pain in my jaw.jjjj j!j"j#26-27?j$j%j&j'I answered no to most of the questions above, but I'm not sure if it has slowed down or actually stopped. Since it hit so quickly and deteriorated so fast, I'm not sure that it has stopped altogether.j(~ j)@j*j+j,j-j.j/j0j1j2j3j4j5j6I had a new type of implant put in. I'm afraid I don't remember the name of it right now. My doctor had a CT done of my skull, then created implants that he thought would fill the "holes" best.j7 Unsuccessfulj8Zj9@?@?@?????@???FjGjHjIjJjKjLjMSeverejN(@@Okk~ k_@kkkk Deepa Jacobk christiankk Teacher k Ok Positivek k kkkkkkkkkkkkkkk2k)urinery infections and menstral disorderskkk k!k"k#k$k%k&)k*k+k,k-k.k/k0k1k2k3k4k58Zk9@@@?@@@??FkGkHkIkJkKkLkMModeratekN&@@Oll~ l@_@llllVictoria NorrelllWhitell Helpline worker l  l l llllllllllllllolfWhen I get stressed or tired I find I am unable to fully close my jaw. It hasn't happened for 6 monthsvlmI have (although now much improved) - suffered with a very low /weak immune system and always used to be illlll l!l"l#l$l% l&(~ l)@l*l+ Unsuccessfull,l-l.l/Somewhat Successfull0l1l2l3l4l5PLASTICGl6>Plastic graft to forehead to even out depression on right sidel7Somewhat Successfull8Zl9?@@??@@@FlGlHlIlJlKlLlMModeratelN0@?Omm~ m_@mmmm Janet TaylormWhitemm Contract Specialist m Am Positivem m mmmmmmmmmmmm{mrI have one very small, quarter size, patch of skin without pigment on my right elbow, but I have always had thatn.m/m&Once or twice I have had my jaws lock.mm m35m m!m"m#m$m% m&(~ m)@m*m+Somewhat Successfulm,m-m.m/m0m1m2m3m4 m5EYEm6strabismus suergerym7Somewhat Successful<m83my eye looks better, but I still have double vision"m9FmGmHmImJmKmL mMMild mNOnn~ n_@nnnnBonnie F. Keenum;n2White American with some Cherokee Indian ancestorsn/n &Adm. Manager in Construction - Retired n  n n nnnnnnnnnnnnnnnI have had surgery for the right jaw as a result of the left jaw being out of line. The left jaw has been a problem from the beginning and reconstructive surgery did completely align the two jaws.nAs stated earleir I have been living with intestinal problems for many years and no diagnose solves the problem. I have taken medication for both stomach and intestinal problems with no results. Tests so far have not given any answers. During the years ofn%nHas never completely stoppedn n!n"n#n$n% n&(~ n)4@n*n+Somewhat Successfuln,n-n.n/n0n1n2n3n4n58Zn9????????FnGnHnInJnKnLnM Very SeverenN@@Ooo~ o`@oooo Jacob McGowan.o%Caucasion - American - Father Englishoo Not applicable - child o  o o oooooooooooooo oooo o!o" o#6o$o%o&)o*o+o,o-o.o/o0o1o2o3o4*o5FoGoHoIoJoKoL oMMild oNOpp~ p `@ppppno name please p+p "program director of alzheimer unit p Ap Positivep p ppppppppppppppp/p&obesity, cellulitis, infections, ezemappin my thirties.p p!p"p# late thirtiesp$p%p&TRAUMArp'ialthough I thought it was in remission and started again after a trauma tothe head as i mentioned before.p(vI can't be sure, but when i was on a diet drug with phentermine I thought that it had speed up the deterioration also.p)p*p+p,p-p.p/p0p1p2p3p4p58Zp9???????FpGpHpIpJpKpLpMSeverepN@@Oqq~ q@`@qqq'qTina Frances Michelle Patersonq MIXED RACEq Mixed raceq NURSERY HELPER q  q q qqqqqqqqqqqqUqLHANDS ALWAYS FEEL COLD I AM NOT SURE OF BLOOD GROUP I THINK IT IS B POSITIVEqqnqePALPITATIONS, IRREGULAR HEARTBEAT, DEPPRESSION, CATTERACT, MIGRANE, BACK PROBLEMS ON RIGHT HAND SIDE,qq 14 -15YRSq q!q"q# 4YRS TO 10YRSq$q% q&(~ q)@q*q+q,q-q.q/q0q1q2q3q4q5TISSUE EXPANDERq6TISSUE EXPANDER TO EXPAND HEAD TISSUE ON BALD PATCH TO ALLOW TISSUE TO BE TIGHTENED MAKING BALD PATCH LESS NOTICEABLE. OPERATION FOR TISSUE TO BE INPLANTED UNDER BROW ON FOREHEAD FAILED CAUSING INFECTION, OPERATION PERFOMED TO REMOVE INPLANTED TISSUEq7 Unsuccessfulaq8XI HAVE LOOKED AT THE PICTURES BELOW, PICTURE 1 AND PICTURE 2 IS MYSELF AT A YOUNGER AGE.Zq9@?@?@?@@@@@@@FqGqHqIqJqKqLqMSevereqN,@&@Orr~ r``@rrrrSherree Wakefieldrwhiterr house wife/mother r Ar Positiver r rrrrrrrrrrrrrrCr:not exactly lock jaw, put yes i can't fully open my mouth.rI just found out that i have an iregalure heart beat. And i have endometriosis that justgot trated for. i am currently seeing a maxiofacial sugeon and a plastic sugeon. And i am about to be seeing a ganetics doctore.r r20r r!r"r#r$r%r&STRESSr'My daughters birth at age 20 was very trama tizzing i had to have an emergeciy cesection, this past year i had another sugery at i noticed again more deteriationr(I was put on depo lupron shots for my endometriosis this year after my sugery. this stuff also got me to have fluttering heart problems. the reason wy i had to have an emergency cesection when i had my daughter was because a nurse gave me someone elses mer)r*r+r,r-r.r/r0r1r2r3r4r58Zr9@?@?@?@@?@@@??FrGrHrIrJrKrLrMModeraterN(@&@Oss~ s`@ssss Nestor Chavezslatinss stufdent s  s s ssssssssssssss ss s9s s!s"s#s$s%s&)s*s+s,s-s.s/s0s1s2s3s4s58Zs9?@@@@??@?FsGsHsIsJsKsLsM Very SeveresN&@@Ott~ t`@ttttSamantha Beth Bishop1t(English Canadian - Irish/Scotish/Englishtt Lab Assisstant t Ot Positivet t tttttttttttttt tttt t!t"t#t$t% t&(~ t)?t*t+t,t-t.t/t0t1t2t3t4t5RHINO!t6Rhionoplasty (spelling?)t7Somewhat Successfult8Zt9@????????FtGtHtItJtKtL tMMildtN@@Ouu~ u`@uuuu Robin NelsonuWhiteuu  Homemaker u Au u u uuuuuuuuuuuuuu uuu around 36u u!u" u#20u$u% u&'u(Okay I have always had a thin face but not to the point where it took everyone's attention when I went out in public but when I got pregnant it started thinning more instead of gaining weight in my face I lost it dramatically and from there it gradually bu)u*u+u,u-u.u/u0u1u2u3u4 u57u8I have had no surgical procedures. I am consulting with my third doctor(cosmetic surgeon) on Monday, fat injections have been recommended at this stage.Zu9@@@?@@@?FuGuHuIuJuKuLuMSevereuN&@@Ovv~ v`@vvvv Marijke ZoonvDutchv;v 2PA - personal assistant to SVP Finance at KPNQwest v Ov Positivev v vvvvvvvvvvvvvvvNot really the jaw itself but the muscle connecting the jaws - sometimes when I jawn the muscle is "stuck" and hurts like the stretch is out of it. Then after 1 minute or so, the tension is of the jaw muscle. It only happens when I jawn.vv v2001v v!I started to have the illness in a period of tremendous stress in my life, when I lost a lot of weight because of not eating or eating not healthy. Since 2 years my life is back to normal as well as my eating habits (spline function and kitney working prov"v#v$v% v&(~ v)@v*v+ Successfulv,v-v.v/v0v1v2v3v4 v57v8I had 2 fat injections - the result was good in the beginning but after 6 months the fat disappeared again. After the second operation a little fat stayed from the 1st operation but again 6 months after the 2nd operation it was back to before. Since 2 monZv9??FvGvHvIvJvKvL vMMildvN@Oww~ wa@wwwwShandra HubbardwAFRICAN-AMERICANwAfrican Americanw REGISTERED NURSE w Aw Positivew w wwwwwwwwwwwwwwwI'VE GONE TO DENTISTS OVER THE YEARS TO HELP WITH THE SEVERE PAIN THAT WOULD SEEM TO BE DENTAL PAIN. IT BEGAN IN MY EARLY 20'S AT THE SAME TIME THAT I NOTICED THE DIMPLE IN MY CHEEK. MY PAIN WAS SO GREAT THAT I BLACKED OUT AND CAME TO ABOUT 5-7 MINUTES LAwWHEN I AM SICK(FLU,FEVER,SORE THROAT,ETC.) I FAINT. BEEN HAVING UNEXPLAINED BLACKOUTS SINCE I WAS A TEENAGER, 13 OR SO. I HAVE BLACKED OUT EVEN WHEN I WASN'T SICK. SOME DOC'S IN THE PAST HAVE SAID THAT I AM BORDERLINE "ANEMIC" BUT NOT ENOUGH TO CAUSE ME Tw w28w w!w" w#26w$w% w&(~ w)?w*w+Somewhat Successfulw,w-w.w/w0w1w2w3w4 w57w8AFTER 3 INTERVIEWS WITH 3 PLASTIC SURG. ONLY 1 SUGGESTED A FAT TRANSPLANT. I HAD IT DONE LAST DECEMBER. I REABSORBED A LOT OF MY FAT. MADE ME VERY SAD BUT MY FACE LOOKS BETTER THAN IT DID. NO ONE EVER MENTIONED ROMBERGS DISORDER. FOUND IT BY ACCIDENT. VERZw9??????@FwGwHwIwJwKwLwMModeratewN@@Oxx~ x@a@xxxx Vicki Noblex Australianxx  OHS Manager x Bx x x xxxxxxxxxxxxxxxOver the years I do not seem to be able to open my mouth as wide as I used to. For example, I can only take small bites of fruit and cannot eat anything cold.xxxx x!I think the changes to my lifestyle, diet, less stress have assisted in my well being and I do not suffer from headaches as much. However the tissue wasting is still happening, but has slowed over the last 15 years and is now very slight deteriorationx"x#x$x% x&(~ x)@x*x+ Unsuccessfulx,x-x.x/Somewhat Successfulx0x1x2x3x4 x56x7Somewhat Successfulx8Zx9?????FxGxHxIxJxKxLxMModeratexN@Oyy~ y`a@yyyyHeidi Del-TorchioyFrenchyy Mother y Ay Positivey y yyyyyyyyyyyyHy?My pains come from my right cheek and my forehead when its coldy yyyy y!y"y#y$y%y&STRESSy'When I'm tiredHy(?Since I was pregnant the seizures happen less often than beforey)y*y+y,y-y.y/y0y1y2y3y4y58Zy9???@@FyGyHyIyJyKyLyMSevereyN@@Ozz~ zb@zzzzBryan McDowellz Irish/Germanzz student z  z z zzzzzzzzzzzzzz zzzz z!z"z#z$z%z&)z*z+z,z-z.z/z0z1z2z3z4z58Zz9@@?????FzGzHzIzJzKzLzM Very SeverezN @@O{{~ {a@{{{{Kelly Silliman${Irish, Itallion and English{.{ %The best job in the world...A Mom! :) { A{ Positive{ { {{{{{{{{{{{{{{{O{FEpstein Barr Virus, IBS, Female problems(as I explained in first part){y{pI Can't answer this acuratly because it started again quite recently, but had slowed down for like a year or so.{ {!{"s{#jIt started when Iwas planning my wedding 1995 but dfinitly speeded up when I became pregnant early in 1996{$?{%{&N{'EDefinitly pregnancy...first three months and then after delivery too.{(~ {)@{*{+{,{-{.{/Somewhat Successful{0{1{2{3{4 {57{8My first reconstructive free flap took 11 hours and was a total failure. I swelled up so much that some skin actually died on my cheek. I actually had a whole there for some time before the stiched it up and now have a scar going across my cheek. My secon"{9F{G{H{I{J{K{L{MModerate {NO||~ |a@|||| Heidi Febles| Spanish/Cuban|Hispanic| Senior Manager/IT | O| | | ||||||||||||||Z|QMy jaw locks up periodically. Its like the muscle is having a spasm and it locks.,|#I have had ovarian cysts and Polyps||| |!I had several surgeries. I had tissue removed from my belly and inserted into the face. It didn't seem to work so they removed tissue from my butt and inserted into my face. I think it has slowed down but now i feel like it is affecting my eyes.|"|#|$|% |&(~ |)@|*|+ Unsuccessful|,|-|.|/|0|1|2|3|4|5I|6@A large piece of dermis from my butt and inserted into my face .|7Somewhat Successful|8Z|9@???????F|G|H|I|J|K|L|MModerate|N @?O}}~ }a@}}}} Amy Bennett}White American}} Computer Professional } B} Positive} } }}}}}}}}}}}}}} }}}} }!}" }#31}$}% }&(~ })?}*}+},}-}.}/}0}1}2}3}4}5}6 Brain biopsy}7Somewhat Successful}8Z}9@????@??@@?F}G}H}I}J}K}L}MModerate}N&@@O~~~ ~ b@~~~ ~Sara~ CAUCASIAN~~  self-employed ~ O~ ~ ~ ~~~~~~~~~~~~~They are permanently numb and feel constantly cold & tingling.. when in hot water or cold temps this effect increases and they turn bluish-purple.~ ~~ ~21~ ~!~"~#~$~%~&)~*~+~,~-~.~/~0~1~2~3~4~58Z~9@@@?@@????F~G~H~I~J~K~L ~MMild~N*@@O~ b@Lauren Couchoud Caucasian  home maker  B Positive    !"#16-21$%&'i noticed the most change after I got married at 16 and had my daughter also at 16 I had another daughter at 18 and a son at 21. the changes have been very gradual, but it is durring these last few years I've noticed the largest change.(~ )@*+,-./0123456biopsy of my right eye lid at age 3 to determine why my lashes fell out- scar tissue was found. but cause for loss was not determined. at age 12 I had reconstructive surgery of the lid to close the gap. (the center lashes fell out- or 1/3 total lashes) th7 Unsuccessful8Z9@?@???@?FGHIJKL MMildN@@ODlI UqT\B?DB_PT0@P@P@P@P@P@P@P@P@P@:P$@P$@P@$P@P$@P@P$55~ 5b@5556Lauralee Pasko-6$white (western european and spanish)6 6information technology 6 6 5 55555555555556I've been diagnosed with a mild case of Raynaud's. My hands, feet and nose are always cold and become purple and numb in cold weather. Recently, after exercising in the cold rain, my right index finger and like right toe started to ache and I experienced 536*Had TMJ as a child. Went away on it's own.[6Rdepression, fatigue, panic attacks, general confusion and forgetfulness, headaches562-3 months of onset 5 !6"5 #6$5%5&STRESS'6stressU(6LI have recently been diagnosed and have not taken any drugs for my symptoms.~ )5*5 +6,5 -6.5 /605 1625 3645 56 66 7686I've noticed the scleroderma plaques seem to start in places that have scars already - I have a scar on my right cheek, which is the result of having a mole removed as a teenager. I've noticed in the past few months, the scar has doubled in size. AdditionZ95@5?5@5?5@5?5@5@5?5@5@5@5?5?FG5H5I5J5K5L5M6ModerateN5*@5(@O55~ 5c@5556Annabelle Wood 66 6Student 6 6 5 5555555555555n6eWhen the weather is very cold, the fingers on her left hand go white and her hands feels all tinglely5 6 65 6 5 !6"5 #66$5%5&6 '6 (6 )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z95@5?5?55@5?5?5?5?5@5?55?5FG5H5I5J5K5L5M6 Very SevereN5"@5@O55~ 5 c@5556 Sandra Lehman6 caucasion6 6Registered Nurse 6O 6Positive 5 5555555555555 65 666-abnormal CBC diagnosed as bone marrow problem5 6 5 !6"5 #6$5%5&6:'61it has been steadily progressive since it started (6 )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z95@5@5?5@5?5?5?5@5?5@5?5?55FG5H5I5J5K5L5M6ModerateN5@5&@O55~ 5@c@5556 Gokhan Ceylan6White6 6 Technician 6A 6 5 5555555555555 65,6#Change in structure and appearance. 65 6 5 !6"5 #6$5%5&6 '6 (6~ )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z95@555?5@5?5@55?5@5@5?5@5FG5H5I5J5K5L5M6 Very SevereN5&@5@O55~ 5`c@5556Henrik Thrling6 kaukasian6 6student 6 6 5 5555555555555a6XThe color of my hands range from very red to almost purple when exposed to cold weather.5 66Have an area, a oval spot (about the size of a small matchbox) under my left breast. I got it when I was about thirteen and got it diagnosed. It was a fairly rare type of skin disease that was said to have most likely been caused by an insect. But since I5 617 5 !6"5#613-16$5%5&6 '6 (6 )54*5+6Somewhat Successful,5 -6.5 /605 1625 3645 56 66 76861st operation: Expander placed under skin over the 'coup' to stretch skin. This for... 2nd operation: An so-called "acrylat" (sort of plastic) were fitted to the bone to cover the 'coup' (left forehead, left side of skull (top of head)). 3rd operation: FaZ95?5?5?55?5@5?5?5?5?5@5@5@5FG5H5I5J5K5L5M6ModerateN5"@5@O55~ 5c@5556 Amlie Lozeau6North American, white6 6occupational therapist 6 6 5 5555555555555 6My hands are often cold5b6YMy jaws were not closing properly: One of my jaw was 'oblique' and the other 'horizontal'6I saw a dermatologist recently because I noticed that I lost hair near to my forehead on my involved side: I am taking now Rogaine 5% to try to control this loss5 616 5!6When I had a surgical reconstruction of the forehead with silicone, the atrophy at this level stopped but not at the level of the angle of my jaw and the cheek."5 #6$5%5&6 '6 (6 )52*5 +6,5 -6.5 /605 1625 364556661)Acrylic (that's the substance the surgeon told me- I was 16) fixed on my skrull and shaped to fulfill the loss 2)Realignment of the 2 jaws by provocative fracture76 Successful86I am waiting for a 3rd one who consists of a soft tissue layer taken on my back to be fixed directly on the inferior jaw to increase the angle of the jaw. To increase the size of my cheek, my surgeon advise me to have fatty material injectionsZ95@5?55?5@55@55555?5@5FG5H5I5J5K5L5M6SevereN5 @5@O55~ 5c@5556Maria Battaglia6White6 6Studnet 6 6 5 5555555555555$6It just started a week ago.5 6 65 6 5 !6"5 #6$5%5&6 '6 (6 )55*5+6 Successful,5 -6.5 /605 1625 3645 56 66 76 86Z95@5?5?55@5?55?5?5@5555FG5H5I5J5K5L5M6ModerateN5@5@O55~ 5c@5556C. Moody6White6 6Student 6 6 5 5555555555555 65 66first symptom was vitiligo around mouth and nose- He was 4 years old and I took him to an dermatalogist and was told to not do anything but watch it. 12-14 months later, I started noticing the atrophy of the face on that side. At times his face looks like5 6 5 !6"5 #6$5%5&6 '6 (6 )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z955555?55?55?55555FG5H5I5J5K5L5M6ModerateN5@5O55~ 5d@5556Amy Michelle Becker6 caucasian6 6Pediatric Resident 6O 6Pos 5 5555555555555 65Z6QMy jaw often "pops" and is painful, but I have full range of motion of the joint.!6I have pernicious anemia5 6 5 !6"5 #6$5%5&6 '6 (6 )51*5 +6,5 -6.5 /605 1625 364556?666Plastic surgery on my scalp to remove the bald places.76 Unsuccessful 86Z95@5?55?5?5@5?5@55@5?5?55FG5H5I5J5K5L5M6 Very MildN5@5$@O55~ 5 d@5556Catherine Parramore6 white - u. k6 6primary school teacher 6A 6Positive 5 5555555555555 65 6 65&6during each of 4 pregnancies. 5%!6slows down during pregnancy."J#6 After birth$5%5&STRESSQ'6Hgiving birth and periods of stress are sometimes followed by a flare up. (6 )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z95@5?5@55@5?5?5?5@5?55?5?5FG5H5I5J5K5L5M6ModerateN5(@5@O55~ 5@d@5556Deborah D. Fambry36*american with german/indian /irish(decent)6 6medical assistant 6B 6Positive 5 5555555555555V6Mat times my hands have stayed cold and achey and get a blueish tent to them .5 66most all DX:have passed with time . except the vetiligo and the joint pain and swelling also my son has a patch of silver that appeared on the rt side of his head about the size of a half doller when he was 12 after a seizuer.5 6 5 !6"5 #6$5%5& '6 (6 )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z95@55@55@55@5@5?55@55?5?FG5H5I5J5K5L5 M6N5.@5@O55~ 5`d@5556Monica M. Seiberling6 caucasian6 6occupational therapist 6 6 5 5555555555555 65 6 65 6 5n!6eI wish I knew. My docs thought that the meds I was on may have helped (Aspirin, Tegretol, Propranolol"5 #6$5%5&6 '6 (6 )5*5 +6,5 -6.5 /605 1625 3645 56 66 7686My physicians advised that I avoid surgery- not sure what "speeds up" the atrophy. Injury to the face was one theory and so they said try not to have any surgeryZ95@55@55@555@5?55?55@5FG5H5I5J5K5L5 M6MildN5$@5@O55~ 5d@5556 Ellen Foley6 Caucasian6# 6mother, landscape designer 6O 6 5 55555555555556Basically, when my hands get cold, the ends of my fingers get numb and whitish. It doesn't necessarily have to be cold out. It can sometimes happen when I am holding a cold drink or if I am in very cold air conditioning.5 6 65 637 5 !6"5 #6$5%5&6 '6 (6 )51*5+6Somewhat Successful,5 -6.5 /605 1625 3645 56 66 76 86T95?5?5@5?5?5?55?5?5?55?5?E F5G5H5I5J5K5L5 M6MildN5@5@O55~ 5d@5556 Shannon Bird 66 6 6 6 5 5555555555555C6:I ussualy changecherry red colour by just standing outside5 6 65 6 5 !6"5 #6$5%5&6 '6(6 methotresate )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z95?55@5?5@5?5?5555555FG5H5I5J5K5L5M6ModerateN5 @5@O55~ 5d@5556derek tyler albertson6white6" 6elementary school student 6 6 5 5555555555555 65 6 65 6 5 !6"5 #6$5%5&6 '6 (6 )5*5 +6,5 -6.5 /605 1625 3645 56 66 76 86Z95?555555?55?55555?FG5H5I5J5K5L5M6SevereN5@5?O55~ 5d@5556Jamie Wilkinson6 Caucasian6 6Real Estate agent 6O 6Negative 5 5555555555555 65 6 65 624 5 !6"5 #6$5%5&6 '6 (6 )530+*5+6 Successful,5-6 Unsuccessful.5/6 Successful05 1625 3645 56 66 76 86Z95?55?55?55?5555?555FG5H5I5J5K5L5M6 Very MildN5@5O~ b@ Alisa Sisk caucasion teacher O   NEIt was thought to be an inflammation of the TMJ and it does re-occur. K!BIt has progressed across my scalp and just above the left eyebrow."#$%&)*+,-./0123458Z9@?@@??@@???FGHIJKL MMildN(@@O&P@"nePT0PPPPPPPPP:P$P$P$PP$PP$P$$P{#b@ %BO!B? D D  O& @@ % OAZ- J@ % PositiveAZ$ @ % AZ$ @% AZ$@%AZ$@%AZ$%AZ$@%AZ$2@%AZ$@%AZ$9@%AZ$7@%AZ$,@%AZ$L@%AZ$:@%AZ$H@%AZ$J@%AZ $Q@ %AZ$ 9@"% AZ!$",@$%""AZ#$$9@%%$$AZ$%B@)%%%AZ &' (AV#)]ڕ@* %))B$*N@,%**AZ+$,.@.%,,AZ-$.<@0%..AZ/$01@2%00AZ1$24%22AZ3$4F@G%44AZ*5F$GS@K%GGAZH"@>@<@J$K@\@L%KKAZ$L@P@ %LLAZM Significant'NP@O%NN>7AZ'O0@N%OO>7AZ!Bfy? D D  A& C@% AAZ- 8@% NegativeAZ Lupus  Scleroderma RARaynauds MS IBDThyroid Ank SpondEye inflammationAsthma CFS DepressionVitiligo Cold Hands*D88?D%B *Dqq? D%B* D88?"D % B!*"D98?$D"%""B#*$D88?%D$%$$B*%Dqq?)D%%%%B &' (MEDi#)@ %))BL*LM Highly sig(ND@O%NN>10AZ(O @N%OO>10AZ!B?& D D  AB' ?% ABAZ: $%Stress(&,@+%&&'AZ ')* Successful6+'?- %++ SuccessfulAZD*,5-'?/%-- SuccessfulAZD,.5/'?1%// SuccessfulAZD.051'ZZZZZZ?7%11 SuccessfulAZD02'6=7'?G'%77 SuccessfulAZ%77B$8F)G'UUUUUU?HDG%B!H'؉؉?I DHDG!I'ى؉?J DIDG!J'oo?K DJDG)K'qq?LDK%B)L'98? DL%B MO!B4l7?& D D  B& .@% BAZ: $%Trauma'&?)%&&Dp&AZ'(Number with surgery#)X@+ %))B*Somewhat Successful>+'?-(%++Somewhat SuccessfulAZD*,>-'UUUUUU?/(%--Somewhat SuccessfulAZD,.>/'$I$I?1(%//Somewhat SuccessfulAZD.0>1'ZZZZZZ?7(%11Somewhat SuccessfulAZD02'6F7'?0%77Somewhat SuccessfulAZ%77B$8FGLine?H Corner of EyeIMiddle of EyebrowJ Near middleK Jaw / CheekL Chin indentM Significant)N'rq?ODN%B)O'qq?NDO%B Denomin# @X@ % B  Lupus~ @)'UUUUUU?+D%B8)* Unsuccessful7+'?-!%++ UnsuccessfulAZD*,7-'?/!%-- UnsuccessfulAZD,.7/'m۶m?1!%// UnsuccessfulAZD.071'?7!%11 UnsuccessfulAZD02'6?7'?)%77 UnsuccessfulAZ%77B08LM Highly sig)N'rq?ODN%B)O'^? DO%B  Scleroderma~ @)'UUUUUU?ND%B8)* No ratingP+O   Pos( Q^Cy ?D D D    RA~ @)'UUUUUU?D%BO   Neg  Raynauds~ @)'rqǡ?MD%B|KL Very Severe'MC&@N%MMDzMAZ)N'88?DM%BO  MS~ )'MD%B6( )% * Successful+Somewhat Successful, UnsuccessfulD-KLSevere'MCA@N%MMDyMAZ)N'88?DM%BO  IBD~ @)'rqǡ?MD%B4'(Surgical TreatmentsL)KLModerate'MCJ@N%MMD}MAZ)N'qq?DM%BO Thyroid~ 0@)'qq?)D%B4'(Any surgical treatment!)'UUUUUU?M D)D *- +- ,-D-K LMild'MCB@N%MMDMAZ)N'?DM%BO  Ank Spond~ @)'UUUUUU?)D%B4'( Fat injections)'ҤI&M?* D**'?+D++'?,D+,'?MD+D-'KL Very Mild'MC$@N%MMDeMAZ)N'rqDZ?DM%BO Eye inflammation~ 9@)'88?)D%B4'#( Flap / pedicle procedure!)'98?* D.D*'?+D/+'$I$I?,D/,'m۶m?D/L-'O Asthma~ 3@)'98?)D%B4'( Bone implant!)'88?* D0D*'ZZZZZZ?+D1+'ZZZZZZ?,D1,'?D1L-'O  CFS~ *@)'qq?)D%B4'( Silicone injections!)'?* D,D*'?+D-+'UUUUUU?,D-,'?D-L-'O  Depression~ H@)'rq?D%BO Vitiligo~ 8@)'UUUUUU?D%B4'(Other OperationsT)O  Cold Hands~ D@)'88?ndsD%B4'(Alloderm injections~ )@* 1 successfulP+O**h*xPT0(Tissue Expander~ )@*Both unsuccessful\@ ((  p  6NMM?IQ]`X$  "X??3` !!` !"` !#` !$2c03d23 M NM4 3QQ ;MMQ ;LLQ3_4E4D $% M 3O&$Q4$% M 3O&"Q4FA 3OS 3 b#M43*#M! M4%  /aM3Oc&#Q .Number of Respondents'4523  O43" 44% G M03O&!Q N%How bad would you rate your disorder?'44eee xx  6dXPP? %O n%]4@d$ ၃zIA $ZӎX <JSTONE: and during< ,>Gxx  6dXPP? 'Kqn'u]4@d$ ^AY!@)))   dMbP?_*+%")))??1DU} }  }  T0 : $ $ $ $$$${$${$z0]"Your age~ #3@~ #2@~ #D@~ #I@~ #@~ #7@~ #?@~ #G@~ #H@~ #@~ #D@~ #G@~ #E@~ #B@~ #?@~ #0@~ #(@~ #=@~ #A@~ #*@~ #A@~ #D@~ #>@~ #?@~ #4@~ #@@~ #B@~ #A@~ #(@~ #@@~ #;@DGl T0!"#$%&'():*$+$,$-.$/0$1$$2{345$678$9{:$;z0<=]>?~ #?@~ !#H@~ "#J@~ ##2@~ $#5@~ %#A@~ &#:@~ '#D@~ (#A@~ )#7@~ *#G@~ +#?@~ ,#&@~ -#F@~ .#:@~ /#K@~ 0#6@ 1#~ 2#5@~ 3#A@~ 4#I@~ 5#?@~ 6#*@~ 7#E@~ 8#@@~ 9#K@~ :#7@~ ;#L@~ <#C@~ =#C@~ >#G@~ ?#G@D?l @T0ABCDEFGHI:J$K$L$MN$OP$Q$$R{STU$VWX$Y{Z$[z0\]]^_~ @#2@~ A#D@~ B#O@~ C#A@~ D#?@~ E#4@~ F#@@~ G#D@~ H#M@~ I#E@~ J#D@~ K#D@~ L#J@~ M#K@~ N#9@~ O#J@~ P#5@~ Q#A@~ R#=@~ S#6@~ T#@~ U#J@~ V#E@~ W#=@~ X#J@~ Y#H@~ Z#$@~ [#C@~ \#?@~ ]#9@~ ^# @~ _#I@D@l`T0abcdefghi:j$k$l$mn$op$q$$r{stu$vwx$y{z${z0|}]~~ `#C@~ a#M@~ b#2@~ c#D@~ d#>@~ e#$@~ f#G@~ g#;@~ h#4@~ i#D@~ j#E@~ k#E@~ l#G@~ m#H@~ n#.@~ o#$@~ p#"@~ q#A@~ r#G@~ s#A@~ t#H@~ u#C@~ v#M@~ w#@@~ x#D@~ y#*@~ z#1@~ {#7@~ |#?@~ }#E@~ ~#P@~ #@D@lT0:$$$$$$${$${$z0]~ #G@~ #7@~ #>@~ #?@~ #A@~ #@@~ #9@~ #5@~ #C@~ 9@@~ 9 @~ 9G@~ 96@~ 9;@~ 96@~ 94@~ 9 @~ 9=@~ 9D@~ 9@@~ 9:@~ 9C@~ 9(@~ 5$@~ 5L@~ #1@~ #1@EEEEED,l T0:$$$$$$${Number of Respondents Age(1(@%<11AZ /0-10/15@%<21AZD/11-2081=@"%<31AZ%/21-3081G@"%<41AZ%/31-4081=@"%<51AZ%/41-5081,@"%<61AZ%/51-60)1@%>60AZ /60+/#. c@ %//  t@ DExpected&98A@DD/Expected Aus and NZ$8R4Di@DV Expected US/~ 0"v/Aus Pop~ ~_@ 0~ 0LA/NZ Pop/#0D{uA % /!j}6#A DD !/Fa4A DD*hDOW````O;KH37T0~ #K@ #C 0(  X  S  ]F!L $ #7Wxp  6NMM?/ I]` $  " ??3` !` !` !PH@0(  `b3d23 M NM4 3Q ; P&Age 0-10 11-20 21-30 31-40 41-50 51-60Q ;Q1 ;Q3_4E4D $% M 3O&Q4$% M 3O&Q4FAZ@ 3OL 3 b#M43*#M! M4523   f d @43" 44% cNM03O$&Q 4Age range of respondents'44eee >@   dMbP?_*+%MnEpson Stylus COLOR 740 ESC/P 2C odhhLetter0DINU"0`ẇ `OSPEAAq" dh??U} } *} }  } } }  } q}  } }  } }  } U} q}  } U}  } } $ } %% } &' } ((q} ))} ** } ++} ,2 } 33} 45 } 66} 7: } ;;q} <F } GGD} HQ } RRU#} SW } XXUeL} Y] } ^^q} _b } cc} dd } ee} ff} ggqL} hq CountryvvT0@v@v@v@v@v@v@v@v@ v@$ v@ v$@ v@$ v@v$@v@v$@v@v@v@v@Gv@v@v@vw@v@v@v@Gv@v@Gv@v@ "ID "Name"Address "City"State Province"Country"Zip / Postal Code"Phone"Email "Your age "Sex " Handedness+ ""What is the name of your condition "'"Have any other names been used" First symptom"Other first symptom"Other first symptom2"Age first symptoms"Age first diagnosed"Delay "Where is atrophy - Face" Side - face"Upper lower - face"Where is atrophy - Arm" Side - arm"Upper lower arm "Where is atrophy - Body" Side - body" chest abdomen"Where is atrophy - Leg" Side - leg "upper lower leg!"Left eye colour""Right eye colour#"Other eye colour info$" Hair problems%" Hair describe&"Epilepsy'"How old epilpesy("Latency for seizures)"What are seixures like *"Arm or leg that shakes?+"Location of shaking,"Side of shaking#-"How often epilepsy attacks."Number of tablets&/"How old when seizures stopped0"Surgery for epilepsy1"Migraine2" Age migraine3"Onset to Migraine4"Headache description5" Side head#6"How often migraine attacks)7" Tingling down left with headache*8"!Tingling down right with headache)9" Weakness down left with headache*:"!Weakness down right with headache%;"Other symptoms with headache<" Facial pain ="Facial pain description!>"Facial pain description2?"Teeth@"Teeth descriptionA"Teeth description2 B"LipsC"Lips descriptionD"EyebrowsE"Eyebrows descriptionF"VisionG"Vision descriptionH"Vision description2I"TongueJ"Tongue descriptionK"Other symptomsL"Other symptoms2M"InvestigationsN"CT Head O"MRI P"EEGQ" Brain BiopsyR" Other testsS" TreatmentsT"SteroidsU" AzathioprineV" PenicillamineW"Reconstructive SurgeryXKOther TreatmentsY"Relatives with PFHAZ"PFHA tell me more ["Relatives with epilepsy)\" Relatievs epilepsy tell me more$]"Relatives medical condition1^"(Relatives medical condition tell me more_" Head injury!`"Head injury tell me more"a"Head injury tell me more2b"Triggerc"Trigger classificationd"Trigger tell me moree" Lyme disease"f"Lyme disease tell me more%g"Anything else I need to know'h"Anything else I need to know 2i"Problems with ethicsj"Queries2k")Have you emailed patient about this query$l"Has the query been resolved%m"Specific Query from patient?n"Details of Query0o"'Replied to specific query from patient?p"Details - what said"q"General Email reply sent?~ #$@$ Manuel Puebla"$Lisandro de la Torre 2417$ Berazategui $BA$ Argentina $1884$ 11-4256-1546 $ferpuebla@ciudad.com.ar~  #3@  $Male $Right $ Parry-Romberg $$Morphoea$ Skin Changes$Facial assimetry started becoming evident in me when i was 6 years old; my mom was the first one to find out while looking at some photographs $+@+1@!+'@ DD%$Right$Lower% $ $% $ $% $  $!$Brown"$Brown #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6*7%8%9%:% ;&<%=$The affected half of my face usuallu hurts; i can feel it in my bones; my teeth and jaw usually hurt too. I haven't been to a doctor regarding those pains >$?%@$On the affected side, my teeth have not fully developed until late age. Most of my "milky" teeth from that side had to be pulled out by a dentist, as they did not get as much use as the ones on the other side (I chew on the healthy side only) The lack of.A$muscular tissue on that side made it impossibleto carry on with the natural procedure of the mouth's self cleaning process which consists of having the internal walls of the cheeks rubbing teeth(as we talk) to obliterate the remains of food particles.B%ZC$QThe ends of my lips on the right side are thinner than the ends on the left side.D% E$F% G$ H$I% J$K$Jaw spasms take place from time to time and they are very painful. I guess it's a muscular contraction from some muscle in the area of the throat.L$They usually happen when i go somewhere it's very cold or with hot/cold temnparture clashes. I believe that they are also related to nervous situations. M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c% d$e% f$ g& h& i& j$k%l%m% n$o%p$General Thanksq%~ #@$Janette Norris $$Sydney$New South Wales$ Australia $ $#$ ginger_pettal@hotmail.com~  #2@ $Female $Right $ Parry-Romberg $(En coup de sabre$Epilepsy=$4? petit mal from 2 years of age (so my mum tells me) $+(@+,@!+@ DD% $Left$Upper% $ $% $ $% $  $ !$Blue "$Blue #$$% %$&% '#(#A)$8? not anymore. i haven't had any seizures since i was 8.*% +$ ,$ -$ .$ /#0%1%~ 2#(@!333 D2Dw4$n? constant, they wont go away. its like someone putting a clamp on my head and tightening it. ? Migraine_Side 5$Both~ 6*?7%8%9%:%';&Extreme fatigue and Depression<% =$ >$?% @$ A$B% C$D%NE$E? my eyebrow separated with the dent then my hair started falling outF%G$? the vision in my left eye is weaker than my right. i need glasses for any work. i have to have my eyes checked everyyear because of my condition. H$I% J$K${? my hair on my head. when my dent started moving back towards the back of my head sections of my hair started falling out. L$ M&N%O%P%Q% R$S$Reconstructive SurgeryT%U%V%W%X&I saw my specialist yesterday.Hhe said the operation went well and he's using me as a case study.He said only a couple of other people have had the artificial bone inserted, and mine has taken well.Y% Z$[% \$]% ^$_%`$v? i had 3 injuries to my head before i was 5 . 1st i ran into a corner of the wall. 2nd the pool gate slammed into me-a$this required butterfly clips 3rd i had petit mal and fell into a coffee table edge this required stitching-- all on my left side.b%c4INJURY - STITCHES9d$0? i think the head injuries could be responsiblee% f$g&? my doctor DR Anthony Holmes(Melbourne Children's Hospital) has done a lot of research into Rombergs and has lectured in Chicago, he thinks Rombergs could be a mutation of the Herpes virus. h& i&j$IS the scleroderma a straight line? The atrophy seems to go diagonally, looking at my face from right to left. Its not jagged but a straight line, as if being cut with a sabre ( I suppose hence the term coup de sabre).k%l%m% n$o% p$q%~ #@$Elizabeth Taylor$21 Lucinda Ave$Wamberal $$ Australia $2260$ 02 43852706$lizzyt60@hotmail.com~  #D@ $Female $Right $Romberg $ $$ Skin Changes&$ loss of tissue in left cheek $+@+@!+ DD% $Left$Lower% $ $% $ $% $  $!$Hazel"$Hazel #$$% %$&%~ '#A@!(#>@ ( D'D)$? Have only ever had 1 seizure which was described as a grand mal.Doctors could not determine wahta caused seizure and the treating neurologist never asked me about Rombergs.*% +$ ,$ -$K.$B? was taking epilem for a period of 2 years after seizure. nil now /#0%1% 2#3# 4$ 5$ 6*7%8%9%:% ;&<%:=$1left side of face. has not been treated by doctor >$?%\@$Sweak bone structure in left jaw, most molars have either been removed or fallen out A$B%1C$(left lip area sags and i have no feelingD% E$F%QG$H left eye waters alot more than right and sometimes have blurred vision. H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c4INJURY - HEAVY FALLdd$[ i had a heavy fall on the left side of my face and the rombergs seemed to start soon aftere% f$Vg&M? I am just so happy someone is finally researching this, and I wish you wellh&Hi Jon, Im sorry for sending a blank E-mail, I not quite too sure how I did that. I was just going to let you know that I will be in Scotland from the 29/7 to the 14/8 and if there is a convienent time to see you during this time. I am really not expe i&j$ Handednessk%l%m% n$o% p$q%~ #:@$Pip Rutherford$ 13 Oak Street$Dubbo$New South Wales$ Australia $2830$ 02 6882 5563"$piprutherford@hotmail.com~  #I@ $Female $Right $ Parry-Romberg $ $$ Skin Changes $ $+ @+ @!+ DD%$Right$Lower% $ $%$Right $Both%$Right $Upper !$Blue "$Blue #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#2@!33$@3 D2D 4$Mild5$Right~ 6*@7%8%9%:% ;&<% =$ >$?%]@$TMy teeth do lack enamel but I don't know whether this is connected with the Rombergs A$B% C$D% E$F%G$Diagnosed by an eye specialist -chronic cyclitis in the right eye with fine K-P and a slight aqueous flare and the typical heterochromia due to atrophy of the iris pigment epithelium on that side.hH$_I also have anisometropia, the right eye being more hypermetropic. I have no signs of glaucoma.I% J$K$I have scoliosis and have just had major back surgery to correct secondary spondylolisthesis. I had a rod and two screws inserted on the right side and a spinal fusion on the left side. The doctor would have liked to insert a rodL$on the left side but found the curvature was too great, hence the fusion. As I have slight muscle wasting on the right side of my back I do feel all my back troubles have been associated with Rombergs. M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c% d$e% f$g&If you would like to know more I would be only too willing to help you. Most doctors I confront have never heard of Parry Romberg Syndrome.h&I was firstly diagnosed with Scleroderma after a biopsy was performed on my right thigh. It was not until I was about 23 (when I moved to another town) that my doctor told me about Parry Romberg Syndrome. He could not tell what would happen later on in li i&,j$#Whereabouts on back is she affectedk%l%m% n$o%p$ Thank youq%~ #<@$ Mitchell Hyde$$920 Coraki Ellengowan Road,$ West Coraki$New South Wales$ Australia $2471$66832227!$shynago@dingoblue.net.au~  #@  $Male $Right $Romberg $ $PFHA$ Skin Changes $ $+@+@!+? DD%$Right $Both% $ $% $ $% $  $!$Brown"$Brown #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$5$Right~ 6*@7%8%9%:%';&hurts to look at bright lights<%=$right side. the doctors said they where night terrors, bnut they weren't. He would wake up crying holding his face on the right side saying, "its hurting, its hurting" by mum >$?%8@$/they dont grip any more properly on right side, A$B%4C$+they are lifted and different on right sideD% E$F% G$ H$I%8J$/tongue wasted on right side.. also tongue tied.K$Mitchells throat has wasted. his voice has changed... gravelly. His right eye has fallen back into his head. and it seems darker in the iris then the left eye.L$His nose is also twisted.his jaw bone has wasted so to has the right orbit.The skin staining goes right down to his neck line along his shoulder. M&N%O%P%Q%R$many blood tests S$T%U%V%W%X&The treatment is 10mg methotrexate ( 0.5mg/kg ) once a week and 2.5mg folic acid every day except the day he has methotrexate.Once a month for six months ( 6 lots ) he gets the IV pulse steroid treatment of 600mg methylprednisolone ( 30mg/kg ) over four hY% Z$[% \$]% ^$_% `$ a$b%c4INJURY _SCRATCHd$there was a dog scratch right on the place it started.. had head trauma, but did not go to doc, had glandular feaver at the age of 3.5 yrse%f$the treatment has made the skin soft on his cheek - it was leathery. The Doctors believe they have stopped the progression.. they said it was "staticxg&oPLEASE write us if there is anything else we might be able to help with. Thankyou Debbie Hyde (Mitchell's mum.) h& i& j$k%l%m%n$I thought I should ask you whether you would like photos of Mitchell. I have them on the computer and could e-mail them to you. Mitchell is just five years oldo%p$ Thank youq%~ #B@$Jennifer van Gemert $$ Melbourne$Victoria$ Australia $ $!$jenvangemert@hotmail.com~  #7@ $Female $Right $ Parry-Romberg $ $$ Skin ChangesZ$QThe dentist observed differences (left to right side) when having a dental check. $+@+@!+ DD%$Right $Both% $ $% $ $% $  $ !$Blue "$Blue #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#.@!33 @3 D2D~4$uVaries from a sharp stinging kind of pain to a dull ache on the right side of my head, generally behind my right eye.5$Right~ 6*@7%8%9%:%H;(?Problems with concentration, signs of depression (low periods).<%?=$6Very rarely, but when so on the right side of my face. >$?%@$I needed to have braces (but that may have been a generic/teenage problem I think) - I did go to a maxiofacial orhodontist as the right and left side of my mouth (inside and out) do differ A$B%C$Again the sides differ. The right side of my lip lacked fatty tissue and was very thin. It is now the opposite problem (too much) as a result of having several fat injections and now having put on weight.D%E$My right is indented.F%RG$IAt times of pupil dialation my right eye causes me to have blured vision. H$I%J$I have an indentation in the centre of my tongue and often have a coated tongue that doctors have told me is called 'geographic tongue'.K$I do wonder sometimes about depression. I realise that many would claim patients with PRS would have 'circumstantial' depression a result of hardship with illness but I wonder if this is so.ML$DI have suffered with depression but do not feel the PRS caused this. M&N%O%P%Q%R$Many tests were done at the time of my first pupil dialation. I could get a list if you would like me to as I am unsure of the names and what not. S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c%INJURY - BIRTH>d$5Although my Mum has a theory about forcep deliveries!e% f$g&I would not say I have migraines as such, but rather I would call them 'headaches'. I have had migranes in the past but not enough to say I suffer with them. Headaches however are a normal part of my life as I seem to go through periods with them at least h&ii&`Best of luck with your research! If I can be of any help just let me know! I would love to help. j$k%l%m% n$o%p$ Thank youq%~ #G@$ Jayne Messias!$1a Lane Street, Richmond$Adelaide$South Australia$ Australia $5033$83526413$jayn@dove.net.au~  #?@ $Female $Right $Romberg  $$$ Skin Changes $ $+6@+=@!+@ DD% $Left $Both% $ $% $ $% $  $!$Hazel"$Hazel #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#*@!33"3 D2DQ4$Hsevere aching over both eyes, similar to tension occurs approx 3 monthly 5$Both~ 6*?7%8%9%:%;&photophobia, dizziness<% =$ >$?% @$ A$B% C$D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q%4R$+full photo workup inc 3D photos, ?? CT scan S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c% d$e% f$ g& h& i& j$k%l%m% n$o% p$q%~ #L@$Deborah Mitchell$8 Graham Street$ Boat Harbour$New South Wales$ Australia $2316$ 02 49 819363#$sjmmitchell@ozemail.com.au~  #G@ $Female $Right  $PFHA $$Romberg$ Skin Changes${At 12, my face started to become crooked, particularly my top lip - right side, and my cheek on the right side was sunk in. $+(@+0@!+@  DD%$Right$Lower% $ $% $ $% $  $!$Hazel"$Hazel #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#(@!33 3 D2DX4$OVisual disturbances, spots before my eyes, nausea and intense pain in the head.5$Right~ 6* @7%8%9%:%{;&rI used to get them all the time - every week to a fortnight, as described above, but they have thankfully stopped.<% =$ >$?%@$Right upper side teeth are very brittle and I have unhealthy gums - I have lost 4 teeth from that area and the back 2 molars are just hanging in.A$I used to experience severe cramping - my jaw used to snap shut and I would not be able to open it and it was very painful - not to mention embarassing - and some of the teeth that I have lost were fractured from these cramps.B%,C$#Top right hand lip just isnt there!D% E$F%G$Right eye is sunk in and as I get older the vision in that eye is deteriorating rapidly. A scan showed a shrivelled optic nerve. The other problem is a permanent blur - I was tested for brain tumors when the blur appearedH$The blur is in the upper right quadrant of the vision in my right eye, and according to the specialist I saw at the time, due to.. See belowI%J$I have been told I have the coup de sabre in my tongue - a slash on the right side of my tongue and that side is thinner and smaller.iK$`atrophy of the blood vessels feeding the eye, these vessels stayed shrunken due to the migraine.L$Facial cramps, described above where my jaw used to snap shut and was impossible to open, with severe pain in the right temple. It would happen at any time - every day. My hearing in the right ear is not as good as the left one. M&N%O%P%Q% R$ S$T%U%V%W%X&I had reconstructive surgery in 1979 which involved a fat transplant and I tried again in 1991, the fat (what was left of it) was removed and I had a flap taken from my groin which was transplanted to my cheek and has its own blood supply - connected to vY% Z$[%m\$dMy son suffered "chucklers" - which they told me was a child hood epilepsy - he has grown out of it.]% ^$_% `$ a$b%c% d$e% f$g&I look forward to seeing your report and if you require more details, I am quite happy to provide them. I have been told that this condition is not hereditary so I would like to see what you find out from others. h& i& j$k%l%m% n$o% p$q%~ #[@ $Les Bienkiewicz $60 Heysen Street $WESTON $ACT $ Australia $2611 $ $bienk@bigpond.com~ #H@ $Male $Left $PFHA $ $ $ Skin Changes% $gradual facial disfigurement $ +3@+4@! +?  D D  % $Left $Both % $ $ % $ $ % $ $ !$Hazel "$Hazel #$ $% %$ &% '# (# )$ *% +$ ,$ -$ .$ /# 0% 1%~ 2#3@! 33 3 D 2D T 4$KMy headaves only last till late 20s - i have been free from them since then 5$Both~ 6* @ 7% 8% 9% :% ;&nausea <%n =$econtinual "ache" .. awareness of tightness. Eye has also sunk and eye is often dry and uncomfortable. >$ ?% @$ A$ B%A C$8left top of lip is "lifted" and lloks like i ma sneering D% E$ F%B G$9.. but .. i always had a weak left eye .. coincidence ??/ H$ I% J$ K$ L$ M& N% O% P% Q% R$ S$ T% U% V% W% X& Y% Z$ [% \$ ]%! ^$My sister (53) has lupus _% `$ a$ b% c%INJURY - MILDLI d$@not sure - possible blow playing football but this is not proven e% f$ g& h& i& j$ k% l% m% n$ o% p$ q%~ #@^@2 $)Kiara Higgins Mother Colleen doing survey $ $Cairns $ Queensland $ Australia $ $ $collmum@hotmail.com~ #@ $Female $Right $ Parry-Romberg $ $ $ Skin Changes $ $ +@+@! +?  D D  % $Left $Both % $Right $ % $Both $ % $Right $Lower !$Hazel "$Hazel #$ $% %$ &% '# (# )$ *% +$ ,$ -$ .$ /# 0% 1% 2# 3# 4$ 5$ 6* 7% 8% 9% :% ;& <% =$ >$ ?%^ @$Unerve damage kiara has had dental surgery to remove the damaged teeth upper left side A$ B%5 C$,wasting of upper lip and restricted movement D% E$ F%; G$2optic neuritis of left eye responded to prednisone H$ I%- J$$almost complete wasting of left side K$vcontractures on ankle and painful aches in legs some wasting of the oesophigus areas of atrophy on back chest and arms L$ M& N% O% P% Q%? R$6barrium swallow spinal tap endoscophy extensive bloods S$ T% U% V% W% X&methetrexate oral predisone and i.v methylpredisilone details of this treatment are available from Dr.Ron Laxer at the Hospital for sick children in Toronto Canada Kiaras treatment was based on a study conducted there. Y% Z$ [%' \$grandfather but stroke related ]% ^$ _%? `$612 months of age fell off sofa and knocked out briefly a$ b% c% d$ e% f$8 g&/kiara has been diagnoised with coeliacs as well h& i& j$ k% l% m% n$ o% p$ q%~ #^@ $Sylvia Hajdukovic# $25 Trafalgar Street Nerang $ Gold Coast $ Queensland $ Australia $4211 $ 61402007294 $sylviahaj@hotmail. com.~ #D@ $Female $Right $Romberg $ $ $ Skin Changes8 $/right side of bottom lip thinned out over night $ +3@+9@! +@  D D  % $Right $Lower % $ $ % $ $ % $ $ !$Blue "$Blue #$ $% %$ &% '# (# )$ *% +$ ,$ -$ .$ /# 0% 1% 2# 3# 4$ 5$ 6* 7% 8% 9% :% ;& <% =$ Right side >$ ?%4 @$+All squeazed together (teeth) Gums very bad A$ B%) C$ Bottom right lip is thinned alot D% E$ F%n G$eRight eye has sunken into the skull Have to wear glasses to level off the eye vision sensitive to sun H$ I%L J$CRight side of tongue has deteriorated and l cant poke out my tongue K$My jaw locks all the time and l cant open my mouth I had excruciating pain in the jaw and the right temple but not so much now after all the electrolic treatment L$My right breast is giving me alot of pain and the doctors say it has to do with the Rombergs Mamogram showed something there but they dont know what it is M& N% O% P% Q%$ R$Every X-Ray possible Biopsy S$ T% U% V% W% X& Y% Z$ [% \$ ]% ^$ _% `$ a$ b% c% d$L was I was 7mths pregnat at the time and l had a very stressful day and the overnight it happened the changes to my face first the lip and then 2weeks later my chin just pucked up overnight agian e% f$ g&My jaw locks all the time and l cant open my mouth I had excruciating pain in the jaw and the right temple but not so much now after all the electrolic treatment My right breast is giving me alot of pain and the doctors say it has to do with the Rombergs  h& i& j$ k% l% m% n$ o% p$ q%~ #@a@ $ Vicki Noble $8/13 Parmenter Avenue $Corrimal $New South Wales $ Australia $2518 $ 61 2 42845738& $vicki.l.noble@bhpbilliton.com~ #G@ $Female $Right $Romberg $ $ $ Skin Changes $ $ +(@+8@! +(@  D D  % $Right $Both % $ $ % $ $ % $ $ !$Blue "$Blue #$ $% %$ &% '# (# )$ *% +$ ,$ -$ .$ /# 0% 1%~ 2#@@! 335@3 D 2D  4$The headaches start above my right eye and move through the 'sabre' mark on my forhead to the crown of my head and radiate to the side, almost to my right ear. 5$Right~ 6*@ 7% 8% 9% :% ;&Initially a neurologist thought they were the result of neuralgia from two surgeries as they seemed to occur more in the colder months. However, stress and lifestyle have a HUGE effect therefore I have a greater incidence when I am unhealthy. I seem to be <% =$I have constant pain in my right jaw. I am constantly seeing my dentist as I have a particular tooth that always aches and following xrays there is never a problem with the tooth.m >$dDentists and neurologist have said it is neuralgia from Rombergs or the surgeries I have undertaken. ?% @$As above. My teeth also 'swing' slightly to the right side and the dentist has advised that even if I were to brace them for a period, they would probably swing back to being uneven again. A$ B% C$As I am now 46 years, I am starting to see some wrinkles and the right side of my mouth (top lip) has become very wrinkly with deep grooves. D% E$The 'sabre' extends from within the hairline down the forehead, down around and under the right eye. Where the mark goes, no hair grows, therefore, my right eyebrow is a bit patchy. F% G$My right eye is extremely sensitive. I have a terigium (cannot spell) on the right eye and need to wear glasses for reading as my right eye is constantly strained and red. Sometimes I get pain in the right eye with nerve twitches for the complete day. H$ I% J$ K$ L$ M& N% O% P% Q%~ R$uI have a 1 cm piece taken from my face (right side near ear) for analysis (25 years ago). Many, many medications etc. S$ T% U% V% W% X& Y% Z$ [% \$ ]% ^$ _% `$ a$ b% c%PUBERTY d$Possibly puberty e% f$ g& h& i& j$ k% l% m% n$ o% p$ q%~ #`b@ $ Jocelyn Clark $ $ Toowoomba $ Queensland $ Australia $4350 $46308290 $jmclark1@bigpond.com.au~ #E@ $Female $Left $PFHA $$ $ Eye problems $ $ ++! + D D  % $Left $ % $Left $ % $Left $ % $ $ !$Green "$Green #$ $%m %$dNot so much the colour but texture. The left side is courser and thicker and the right is fine hair. &%~ '#@! (#@( D 'D  )$Scary especially when young. The onset was sudden. They weren't the most serious ones but enough to give me a headache when coming to. *% +$Leg ,$ -$8* .$!Dilantin, Tegretol and Phenobarb.~ /#@@ 0% 1% 2# 3#w 4$nAfter I started eating and drinking Milo I get flashing coloured lights but not necessarily with the headache. 5$ 6* 7% 8% 9% :% ;& <%q =$hMy doctors have never heard of my condition - especially at Med school. They just did not know about it. >$ ?% @$My left side of my face was shorter which made my right middle tooth look more as though it was in the middle of my mouth. Boy did I get criticized for that. I still have a baby tooth left on the left side down the bottom. It is a very strong tooth. A$ B%. C$%My mouth is shorter on the left side. D%d E$[Shorter on the left side, and particularly sensitive to pluck my eyebrows on the left side. F%| G$sMy left eye was affected and not developed properly especially the connections at the back of the eye to the retina H$ I% J$ K$When I was pregnant with my second son Michael, I was given a epidural needle in my back on the left side. Well, he must have tried to at least three or four thunps before he had got it in. He (the anaethetist) could not believe what he was seeing L$but finally managed to get it in after nearly knocking me off the bed. The bone structure on that side seems different than the right. The nerves on the left side particularly sensitive especially if I get my legs waxed. M& N% O% P% Q% R$ S$ T% U% V% W% X&There is no treatments. My mother was told by my family doctor when I was a baby to treat me like the other kids. This was the most obsurd and insensitive comment anyone could have said. Y%M Z$DBut my grandmother who I take after has a smaller left side as well. [% \$ ]% ^$ _% `$ a$ b% c% d$ e% f$V g&MMy left arm is a little tighter when I get really stressed or under pressure. h&9 i&0I can't believe somebody wants to know about me. j$ k% l% m% n$ o% p$ q%~ #@$ Susan Emery$50-7925 Simpson Road$ Saanichton $BC$Canada$V8M1L3$ 250 652 0293$semery@pacoast.com~  #B@ $Female $Right $ Parry-Romberg $ $$ Skin Changes$y I noticed my left side of my face was starting to look skeletal like and the tissue felt thinner than my right (no fat).$My right eye lid looked droopy but only becuase myleft eye was appearing very sunken. so basically nothing wrong witht he right side of my face just my left side.+6@+;@!+@ DD% $Left$Lower% $ $% $ $% $  $!$Hazel"$Hazel #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#4@!333 D2DF4$= deep throbbing in my head and then sharper pain on one side. 5$~ 6*@7%8%9%:%;& Face pain<% =$left >$?%@$ more my gums have receded on the left side.there is tissue loss in the upper frontal region so it is very boney inside my cheek to gum area A$B% C$D% E$F%wG$nmy eye sight feels weaker and my eyes get more tired but it could just be age and working on computers all day H$I% J$ K$ L$ M&N%O%P%Q%R$I had a full medical check done 2 years ago, as requested by my neurologist, Dr. Benasayag. Anyhow, i have never taken any medicine or drugs for this disease. S$T%U%V%W% X&Y% Z$[% \$]%-^$$Father Diabetic. Grandfather Cardiac_% `$ a$b%c% d$e% f$g&? I would just appreciate not being named in any publication. I did allow my plastic surgeon to use my photos in discussing the illness with new patients but that was just between them.h&I would be interested in anything the research comes up with. This is a very mistifying disease and can be very hard to deal with emotionally. i& j$k%l%m%?n$6Needs reassured that name won't be used in publicationo%1p$(Reassured - mentioned emotional problemsq%~ #8@$Tammy Loretta Fleming$Box 155$Benalto$Alberta$Canada$TOM OHO$ 403-746-2977!$tfleming@wolfcreek.ab.ca~  #?@ $Female $Right $ Parry-Romberg  $$$ Skin Changes$A small bald patch started on top of my head, then deepened and continued to travel down my scalp, forhead,eye,and nose.Also two other bald ravines on the right side of my scalp apeared $+@+?@!+9@ DD% $Left$Upper% $ $% $ $% $  $!$Green"$Green #$$%)%N Extreme Hair loss on top of head&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3#^4$UHave difficulty with sinus on left side. Horrible sinus headaches when I have a cold. 5$Left 6*7%8%9%:% ;&<%=$I've never complained to a Dr. about it as I have not had a Dr. who knew any more about the desease than me.I have just a general feeling of tight squeezeing on the left side of my face. It also feels like someone is pushing on my eyeball >$?%@$The top tooth on the left,right next to the front tooth, never came in after I lost the baby tooth. The bottom,left incisore came in half formed like a volcano and was WAY out the side of my gum and way evenually removed.A$Top left wisdom tooth never has come down.(X-rays show it's there) All other teeth are naturally perfect as are the rest of my familys teeth.B% C$D%|E$sOnly half an eyebrow on left side as the hair al fell out when I was 6 or so as the desease travelled down my face.F%/G$&Left eye is weaker and light sensitive H$I% J$K$I am very curious as to whether stress may trigger more atrophy, as my patches (mostly on scalp) have gotten deeper and wider at times of high stess in my life. L$ M&N%O%P%Q% R$None S$T%U%V%W%BX&9I am going to have fat injections to my face on May 30th.Y% Z$[% \$]% ^$_% `$ a$b%c%STRESSId$@Maybe. Stressful time as my parents were having a messy divorce.e% f$g&I am VERY excited about this survey and happy to be finally diagnosed. It has been wonderful to find the Rombergs Connection. This is a very lonely desease to live with and the website has given me much peace and suport. Would love to have a copy of your h&Hello Dr. J I was pleased to here from you and I am so excited that someone is interested in this desease from the medi i& j$k%l%m% n$o%p$ Thank youq%~ #9@$Erik R. Copeland$2022 Windy Oaks Drive$ Burlington $Ont$Canada$L7M 2R5 $$regcopeland@home.com~  #0@  $Male $Right $Romberg (En coup de sabre)linear scleroderma$ Skin Changes)$ Alopesia on the top of his head. $+$@+,@!+@ DD% $Left$Upper% $ $% $Left$Chest% $  $ !$Blue "$Blue@#$7is also colour blind but so is his maternal grandfather$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6*7%8%9%:% ;&<% =$ >$?%@$his teeth have not been affected but he could use some orthodontic work. I am afraid to have the work done in case it makes his condition worse. A$B% C$D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q%uR$lI can't recall all the tests he has had. He went to a clinic at Sick Children's Hospital in Toronto, Ontario S$T%U%V%W%X&A skin ointment was prescribed (I'm sorry I can't recall what it was) but a pharmacist advised us that cream could agravate his skin. My son is a redhead with the pale skin that comes with it. He decided he didn't want to attract any more attention to hisY% Z$[% \$]% ^$_%`$My son received a bump on his forehead while playing hockey. A tiny screw that attaches the face mask to the helmet poked into his forehad. He should have had a stitch but he wouldn't let the doctor near him. Can't recall if he already had the alopesia a$b%c% d$e% f$g&Our son was seen by a Dr. Bernice Krafchik at the Hospital for Sick Children in Toronto. She was/is the head of the Dermatology Dept. Our son was also seen by Dr. R. Laxer who is a Rhumatologist. They felt our son had a combination of Parry-Romberg/linearh&Erik gets headaches, though not migranes. Whether it is caused by PR, it is difficult to tell as he uses a computer quite a bit. Erik also seems to get a lot of leg aches but he works in an indoor ice rink where he does a lot of walking wearing work boots i& j$k%l%m% n$o%p$ Thank youq%~ #?@$Jenifer Reaveley Gleed$24202 56th Ave$Langley $BC$Canada$V2Z 2N9$ 604-533-7360;$2d._gleed@telus.net (Dee Gleed filling out survey)~  #(@ $Female $Right $ Parry-Romberg $ $$ Skin Changes $ $+$@+&@!+? DD%$Right$Upper% $ $% $ $% $  $!$Hazel"$Hazel #$$%R%NIHair Loss from forehead to upper back part of skull along the center line&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#&@!33?3 D2D 4$ 5$Both~ 6*@7%8%9%:%;&Not Migraines but had freguent headaches. 3 to 5 per week Controled with 2 Tylenal. The headaches where frontal in nature, lasting 2 to 5 hours. Light somewhat bothersome (One of the reasons an MRI was done and her diagnosis changed from En coupe de Sabre<% =$ >$?% @$ A$B% C$D% E$F%G$Not exactly sure what changes were detected in her Rt eye. Some type of floaters caused by inflamation. With cortisone treatment condition disappeared and has never reoccured. (Seen every three months by an opthomologist) (Second reason MRI was done) H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W%X&MethotrexateCortisone started in large dose. Methaltrexate started at same time in low dose. Weaned off of cortisone over 3 months. Methaltrexate increase over three month to 8 pills once a week. Has been on them for a year and 5 months at that dosageY% Z$[% \$]% ^$_% `$ a$b%c4INJURY WITH BRUSINGd$Prior to the start of the disease my daughter colided with her brother causing a major bump and bruise on her forehead. 2 Weeks later she ran into the corner of a wall which also caused more bruising. It never went away so we contacted our& e% f$g&Jenifer's Parry Rombergs has not been active now for 6 months. If continues to show no sign of flare up her Methaltrexate dose will be gradually reduced and stopped over an eight month period. Jenifer's MRI show changes to the outer layer of her brain (whh&The MRI showed changes to the white matter on the right side of her brain. 2nd MRI 6 months later showed no changes. She has a third MRI booked in October. Jenifer's PRS is dormant at this time. She has had no further changes to face for over 10 months Do i& j$k%l%m% n$o%p$ Thank youq%~ #@@$Michelle MacLellan $$ Coquitlam $BC$Canada$V3E 1C2 $$emilydec31@hotmail.com~  #=@ $Female $Right  $PFHA $ $$ Skin Changes3$*The right side of my face began to Atrophy $+*@+1@!+@ DD%$Right$Upper% $ $% $ $% $  $!$Brown"$Brown #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#*@!333 D2D 4$ 5$Both~ 6*@7%8%9%:%;&Sometimes they cause me to vomit, When I began to show signs of the migraine I need to be in a dark quiet place. I did however smoke for yrs and since I have quit smoking due to pregnancy, the migraines have stopped. I was prescribed Tylenol 3, but I do n<% =$ >$?% @$ A$B%!C$Slight diff in my smile.D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]%^$A second cousin has been diagnosed with Scleroderma. They are no other records of anyone else in my family other than her and I._% `$ a$b%c%INJURY - BIRTHd$Possible, When I was born I was delivered with forceps. I had a black mark down the right side of my face. My mother also noticed over my toddler yrs that I had a lazy right eye.e% f$g&As for the reconstructive surgery. I will be having this done on June 14th, 2001. They will be taking a muscle from my inner thigh and will place it in the right side of my face. My surgeon will also correct a small dent I have in my forehead with a coral h& i&j$ Handednessk%l%m% n$o%p$ Thank youq%~ #C@$Karen E.A. Smith$189A Grenfell Heights$Grand Falls-Windsor $NF$Canada$A2A 2J2$ 700 489 8079"$karensmith@mail.gov.nf.ca~  #A@ $Female $Right $Romberg $ $$ Skin Changes $ $+@+@@!+;@ DD% $Left $Both% $ $% $ $% $  $ !$Blue "$Blue #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#6@!330@3 D2Dq4$hsometimes stabbing pain in the left temple ... there seems to always be an aching pain on the left side. 5$Left 6*7%8%9%:% ;&<%=$left side ... i have precious no knowledgeable medical personnel in my area, therefore, much of what i experience goed unreported and is thus not described by doctors >$?%a@$Xweaker on the left side ... more crowded on the left side ( due to less space, i guess)? A$B%QC$Hsmaller and thinner on the left side, plus more lines above the left lipD% E$left thinner than rightF%'G$astigmatism .. left eye weaker H$I%%J$left side smaller than rightK$large dark (yucky) patch on the left side of my neck ... called a borth mark but obviously related to the rombergs also , i have a "patch" ( called "cafe au lait" by doctors) that is on my lower back , but does extend past the left side.L$as well, there is an overall weakness in all muscles on the left side of my body .. and i can notice a difference in size as well ... with the left side being smaller. also the hair on the left side of my head is much thinner that the right M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]%^$my father has the cafe au lait spots as well as a skin disease that is associated with leprosy ?? can't remember the name of it but it is controlled by medication_%,`$#a few "bumps" that required stiches a$b%c% d$e% f$g&i have lived most of my life with this thing not knowing what i had ...i still do not have immediate access to a medical person who can guide me through this ... i would like to know if there are any tests i SHOULD have completed and whether or not this th& thank you for your response ...the skin problem dad has is called Dermatitus Herpetaformis (excuse the spelling!!!) ... it is controlled by a medication called Dapsone (i think) the difference in the size of my left and right limbs is not noticeable  i&=j$4Left arm,leg and body affected? Fathers skin diseasek%l%m%Bn$9Do you know any specialists - any test I should have had?o% p$q%~ #K@$Nicholas Rossy$341 Geneva Crescent$Montreal$Quebec$Canada$H3R-2B1$1-514-733-1529$sgr@vl.videotron.ca~  #*@  $Male $Right (En coup de sabre $$Romberg$ Skin Changes $ $+"@+*@!+@ DD% $Left$Lower% $ $% $ $% $  $!$Brown"$Brown #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6*7%8%9%:% ;&<% =$ >$?% @$ A$B% C$D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W%6X&-skin creams, laser surgery to remove the markY% Z$[%;\$21st cousin diagnosed at 18 years old with epilepsy]% ^$_% `$ a$b%c%&d$possibly a bruise to the facee% f$g&Actually, I am Nicholas's mom doing this survey. I am hoping that this disease has stopped. We were not aware of what was happening to his face, & he is lucky because it is not a very large area that has been affected to date. No one was able to identify  h& i& j$k%l%m% n$o% p$q%~ #M@$Laurene Stanners $308 - 1010 McKenzie Ave$Victoria $BC$Canada$V8X 4B2$ 250 744-5985$beanielms@hotmail.com~  #A@ $Female $Right $ Parry-Romberg $ $$ Skin Changes$Since basically birth I had had a concave left forehead, my left nostril was quite small compared to my right, my left upper lip was quite small compared to the right. When I hit about 25$I guess the syndrome excellerated and suddenly my left eye sunk in, and it started to get irritated all the time(from drying out). I lost all fatty tissue on the left side of my face, and now there is a big indent underneath my left eye+?+;@!+:@ DD% $Left $Both% $ $% $ $% $  $!$Green"$Green #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#.@!33,@3 D2D4$ See below 5$Left~ 6*@7%8%9%:%;&From fifteen to seventeen I had blurry, tunnel vision. It would then clear and the pain would arrive. If I could get the Tylenol into me during the blurry, tunnel vision and get to bed to sleep I could miss the pain. I did not have migraines for awhile un<% =$ >$?%@$I am not really sure if it affected my teeth. My teeth were all over my mouth and I had too much so I had a second tooth removed and braces and retainers from the age of 12 - 17.A$At 8 I also had some gum surgery as my gums were receeding and if I had not done that I would have lost all my bottom teeth. None of this may be related to the syndrome.B%uC$lMy upper left lip looks like it is missing a large portion of it, making it a lot smaller than my right lip.D% E$F%G$My left eye was always lazy, and after they did surgery, by putting in three orbital props to raise the eye (after it sunk in), they caused me double vision when I look left, up or down.H$They removed the three orbital props, thinking maybe they had interfered with my vision, but I still have the double vision, and my left eye is back to being sunk in.I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W%X&I also had some fat injections (from my thigh) to my left lip and to under my left eye. Neither worked as the fat disappeared within about two to four weeks.Y% Z$[%]\$TI have a second cousin in Australia who developed Epilepsy when she hit her forties.]% ^$_% `$ a$b%c%d$It seemed to excellerate when I was working out on weights. I am big into running, swimming and biking, but when I got involved in weight training I lost a lot of baby fat. From then it seemed to keep going on my face even after I quit working out.e% f$g&I have a lot of bumps and hollow areas on the top of my left head. At times there is a lump that aches on and off and then stops for awhile. I also had a bigger left sided jaw, so when they did the disasterous eye surgery and the forehead surgery, they ca h& i& j$k%l%m% n$o% p$q%~ #V@$D.Garvin $ $ $$Canada $ $$bulldog@sympatico.ca~  #D@ $Female $Right $Romberg $ $$ Skin Changes $ $+(@+<@!+0@ DD%$Right $% $ $% $ $% $  $!$Hazel"$Hazel #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6*7%8%9%:% ;&<% =$ >$?% @$ A$B%!C$bottom right lip is numbD% E$F% G$ H$I% J$K$i have a very mild case of it compared to alot of people. it has affected only the right side from my cheek bone down including the skin on my neck. L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c% d$e% f$ g& h& i& j$k%l%m% n$o% p$q%~ #`@$Samantha Beth Bishop $7 Dahlia Street, Apt. 4$ Dartmouth$ Nova Scotia$Canada$B3A 2R6$ (902)461-2998$$beth.bishop@ns.sympatico.ca~  #>@ $Female $Right $Romberg $ $$ Skin Changes $ $+0@+1@!+? DD% $Left $Both% $ $% $ $% $  $!$Hazel"$Hazel #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#,@!333 D2D34$*Doctors describe them as Classic Migraines 5$Both~ 6*@7%8%9%:%;(along with the tingling it's like a dead weight. I'm very clumsy. When this starts I can stop it before the headache starts with 2 extra strength Tylenol. Sometimes it starts with squiggly lines going across my vision and I can stop it the same way as abo<% =$ >$?% @$ A$B% C$D%ZE$Qmy eyebrow is still there but I have a "dent" on that side of my face (left side)F% G$ H$I% J$ K$ L$ M&N%O%P%Q%PR$GI've had a CT scan and an EEG but it was for investigating my migraines S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c4INJURY WITH BRUSINGDd$;getting a volleyball spiked right in my face at close rangee% f$g&migraines - run in father's side of family vision oddities - I've got "blind spots"(grey spots) in about the same areas in both eyes (1 in each eye). I've had all kinds of tests done but they don't seem to think it's related to the Romberg's. The speciali h& i& j$k%l%m% n$o% p$q%~ #@S@$Michel Laetitia$23 rue de calvas$nimes $$France$30000$04 66 27 05 47$aljela1@libertysurf.fr~  #?@ $Female  $Left $Romberg $ $$ Skin Changes $ $+=@+?@!+@ DD% $Left $Both% $ $% $ $% $  $!$Brown"$Brown #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$Left~ 6*@7%8%9%:% ;&<% =$ >$?% @$ A$B% C$D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c% d$e% f$Og&Fis there any link with vaccination hepatite B (I had 10 injections...) h& i& j$k%l%m% n$o% p$q%~ #`a@$Heidi Del-Torchio$21 rue de la cte$ Hrimoncourt $$France $)$ 03.81.30.93.15.//06.12.41.92.41.$del-torchio@voila.fr~  #4@ $Female $Right $ Parry-Romberg $ $$ Skin Changes'$progressive Facial Hemiatrophy $+,@+1@!+@ DD%$Right $Both% $ $% $ $% $  $!$Brown"$Brown #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#.@!33?3 D2D 4$5$Right~ 6*@7%8%9%:%+;&"Above refers to a 'tetany seizure'<%%=$ALGIE VASCULAIRE (in french) >$?%@$ Right teeth A$B%C$My lips are wastedD% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W%X& painkillersY% Z$[% \$]%1^$(My grandmother hgad trigeminal neuralgia_%D`$;he thinks i'm my pains are psychological "hysteric nevrose" a$b%c% d$e%'f$the doctors says it isn't thatg&i'm a french i'm 20 years old. i can't find informations about this symptomes ( doctors don't know it and believe that my pains are psychological) so could you send me information about this characterization and the treatment for this syndrome. i would alh&HELP ME, PLEASED i& j$k%l%m% n$o% p$q%~ #_@$ Deepa Jacob.$%YD Equipments, Pulamon , Kottarakkara$Kollam$Kerala$India$691506$ 0474-453225$ydeq@satyam.net.in~  #@@ $Female $Right  $PFHA $$Morphoea$ Skin Changes $ $+9@+@@!+ @ DD% $Left $% $ $% $ $% $  $!$Brown"$Brown #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2# @!3313 D2D4$ svere migrain 5$Left 6*7%8%9%:%;&fading of vision<% =$ >$?% @$ A$B% C$D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q%R$x-ray S$T%U%V%W%3X&*took tablets to increase blood circulationY% Z$[% \$]% ^$_% `$ a$b%c% d$e% f$ g& h& i& j$k%l%m% n$o% p$q%~ #N@$Ashraf5$,Saadat abad, motahari shomali, sahel 3, N.12$Tehran $ $Iran$ 1998875461$98 - 21 - 207 - 2104!$poppycorn_sh@hotmail.com~  #B@ $Female $Right $Romberg $ $$ Eye problems $ $+,@+A@!+5@ DD% $Left$Upper% $ $% $ $% $  $!$Brown"$Brown #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$~ 6*@7%8%9%:% ;&<% =$ >$?% @$ A$B% C$D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[%\$ My mother]% ^$_% `$Something like epilepsy a$b%c% d$e% f$ g& h& i&?j$6What kind of eye problems? Did the scan show anything?k%l%m% n$o% p$q%~ #F@$ Sandra Shaw%$17 Leinster Lawn, Clonskeagh$Dublin $14$Ireland $$00 353 1 2697252$sandrashaw@eircom.net~  #A@ $Female $Right $Romberg $ $$ Skin Changes $ $+@+4@!+.@ DD% $Left$Lower% $ $% $ $% $  $ !$Blue "$Blue #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#.@!33$@3 D2D-4$$intolerance of light or noise nausea5$Right~ 6*@7%8%9%:% ;&<%<=$3left hand side - mild affected by wind particularly >$?%!@$no room for wisdom teeth A$B%?C$6whisper" upper lip with up drag lower lip also thinnerD% E$F% G$ H$I%J$left side is thinnerK$Hyperpigmentation around left eye and on left side of neck Vitilgo in front of left ear and on left side of back -small patch half way down. Bone involvement upper and lower left jaw and left side of skull. Considered mild. L$ M&N%O%P%Q%:R$1skin biopsy of vitiligo from left side of my back S$T%U%V%W% X&Y% Z$[%3\$*1st cousin ( only 1 out of 26 1st cousins)]% ^$_%.`$%Concussion following a sports injury. a$b%c%+d$"Bad attack of measles when I was 4e% f$ g& h&i&After year of lack of knowledge I think all neurologists should provide information to their patients when diagnosed, even if it's just to tell them the web address of Romberg's connection. Please feel free to contact me if you require any clarification oj$Why did she have EEGk%l%m% n$o% p$q%~ #N@$Aishling Cronin$ Ballycreen$ Glounthaune$Co.Cork$Ireland $,$#01` 4354351 / 0868490374 Code 00353 $~  #(@ $Female $Right $ Parry-Romberg $ $$ Skin Changes $ $+@+"@!+@ DD% $Left$Upper% $ $% $ $% $  $ !$Blue "$Blue #$$%'%NHair thinning on affected side&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2# @!33?3 D2DJ4$AHeadaches have not been diagnosed as migraine - occur irregularly 5$Left~ 6*@7%8%9%:% ;&<% =$ >$?%\@$STeeth on affected side are smaller, slow growing. X-ray of gums, show smaller roots A$B%:C$1Lip on left hand side is smaller - curves upwardsD% E$F% G$ H$I%\J$SFrom midline of tongue to the outside has significant atrophy on the left hand sideK$Skin on lower left area of chin is coloured bluie, sunken area of muscle on left cheek area very noticeable (when upset - Aishling queries ' why do I have a hole in my face') L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]%#^$Father, Uncles - Psoriasis_% `$ a$b%c%td$k?Chicken pox or a viral infection which was associated with pains (shooting pains) in face area (left side)e% f$ g& h& i& j$k%l%m% n$o% p$q%~ #J@$ Myounghee Kim'$1-3-7,Nakagawanishi, Ikuno-ku,$Osaka$Osaka$Japan$544-0032$81-6-6741-1809$mkim@oct.zaq.ne.jp~  #@@ $Female $Right $Romberg $ $$Epilepsy $ $+9@+@@!+@ DD%$Right$Lower%$Right $Both% $ $%$Right  $Both!$Brown"$Brown #$$% %$&%~ '#9@!(#E( D'D )$*% +$Arm ,$ -$8 .$~ /#;@0%1% 2#3# 4$ 5$ 6*7%8%9%:% ;&<% =$ >$?% @$ A$B% C$D% E$F% G$ H$I% J$K$I have been suffered from vitiligo since I was a child and I find some white spots on my tighs, arms, body at the same place where the fat was reduced by Romberg. L$ M&N%O%P%Q% R$ S$T%U%V%W%qX&hI have removed Amargam fillings from my tooth suspecting the posibility of causing problems on my brain.Y% Z$[% \$]% ^$_% `$ a$b%c%d$I had been suffered from epilepsy just after I stared working as flight attendant (international flight) and it became serious when I changed to fly longer flight and had problem of jet lag all the time.e% f$ g& h& i& j$k%l%m% n$o%!p$Thanks - asked about MRIq%~ #U@$ Hyunjin Lee%$Donamdong hanjinAPT 201-1505$seoul $$Korea$136060$82-2-6221-2053$hyunjin@ksri.org~  #;@ $Female $Right $Romberg $ $$ Skin Changes $ $+8@+;@!+@  DD%$Right$Lower% $ $% $ $% $  $!$Hazel"$Hazel #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2#8@!33#3 D2D54$,Doctors whom I met didn't say about headache 5$Both~ 6*@7%8%9%:%;& No symptoms<% =$ >$?% @$ A$B% C$D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c% d$e% f$ g& h& i& j$k%l%m% n$o% p$q%DHOlY U  Y 3 5 , ]  q " { ^ vT0@!v@"v@#v@$v@%v@&v@'v@(v@)v@$*v@+v$@,v@$-v@.v$@/v@0v$@1v@2v@3v@4v@G5v@6v@7v@8vw@9v@:v@;v@G<v@=v@G>v@?v@~ #;@ $ Julie Bassett( $14 Merchant Ave, Te Atatu South $Auckland $ $ New Zealand $ $ 9 834-6040$ $julie.bassett@nzl.xerox.com~ #?@ $Female $Right $Romberg $$ $ Skin ChangesJ $AThe fat tissue started to disappear from my cheek and temple area $ ++@+2@! +@! D D  % $Right $Both % $ $ % $ $ % $ $ !$Hazel "$Hazel #$ $% %$ &% '# (# )$ *% +$ ,$ -$ .$ /# 0% 1% 2# 3# 4$ 5$ 6* 7% 8% 9% :% ;& <% =$ >$ ?%] @$TIt may have. I have a small one (instead of 4) prong molar at the back on the right. A$ B% C$ D% E$ F% G$ H$ I% J$ K$ L$ M& N% O% P% Q% R$ S$ T% U% V% W%L X&CVitamin B injections for 6 weeks, Homeopathic powder (No idea what) Y% Z$ [% \$ ]% ^$ _% `$ a$ b% c4INJURY _SCRATCH d$I did get bitten by a spider on that side of my face before any sign of the disease. I'd doubt very much that it would have anything to do with it but I thought I'd menion it anyway. e% f$ g&I did get bitten by a spider on that side of my face before any sign of the disease. I'd doubt very much that it would have anything to do with it but I thought I'd menion it anyway. My atrophy is my only symptom and this appeared to stop soon after I was h& i& j$ k% l% m% n$ o% p$ Thank you q%~ !#H@!$Angela Mary Sherning!$7/24 Middle Road,!$Havelock North!$ Hawkes Bay!$ New Zealand !$!$0064 068777709!$ Not available~ ! #H@! $Female! $Right! $Romberg ! $$!$ Eye problems !$ !$!+7@+7@!!+" D!D!!%!$Right!$Upper!% !$ !$!% !$ !$!% !$ ! $ !!$Blue !"$Blue !#$!$% !%$!&% !'#!(# !)$!*% !+$ !,$ !-$ !.$ !/#!0%!1% !2#!3# !4$ !5$ !6*!7%!8%!9%!:% !;&!<%R!=$IRight sided facial pain caused by progressive atrophy and lots of surgery !>$!?% !@$ !A$!B%4!C$+Right side of mouth is pulled up by atrophy!D% !E$!F%`!G$WRight eye severely sunken. Have had surgery to bring eye slightly forward. Wear glasses !H$!I% !J$!K$My right nostril has been pushed slightly upwards and causes a lot of discomfort. I have had surgery to try to fix it but all unsuccessful. Sometimes when I yawn my right jaw locks, very painfulk. I wonder if this is because of Romberg Syndrome !L$ !M&!N%!O%!P%!Q% !R$ !S$!T%!U%!V%!W%5!X&,Fat transplants -not successful - reabsorbed!Y% !Z$![% !\$!]% !^$!_% !`$h !a$!b%!c% !d$!e% !f$!g&My facial atrophy is still progressing for some reason. My main problmes is my right eye which has sunk right back. I have had man surgeries with some success !h&!i&Thank you for doing this survey. I look forward to a copy of the results. Romberg syndrome is such a cruel condition. I wish I could find out more about this condition. Why do some people get it?)!j$ No Email. Wrote a letter instead!k%!l%!m% !n$!o% !p$!q%~ "#Q@"$ Dianne Lennox "$ "$ "$"$ New Zealand "$ "$""$barrylennox@earthlink.net~ " #J@" $Female" $Right " $PFHA" $ "$"$ Skin Changes'"$White patch of hair on RH side "$"+$@+(@!"+@# D"D""%"$Right "$Both"% "$ "$"% "$ "$"% "$ " $"!$Brown""$Brown "#$"$%9"%$0RH front side was a little whiter (when younger)"&% "'#"(# ")$"*% "+$ ",$ "-$ ".$ "/#"0%"1% "2#"3# "4$ "5$ "6*"7%"8%"9%":% ";&"<%("=$Mild and occassional on RH side ">$"?% "@$ "A$"B% "C$"D% "E$"F%q"G$hRH eye has a different vision to the LH, glasses correct this. RH eye suffers from blocked lacrymal duct "H$"I% "J$"K$RH eyelid appears to "droop" and this eye appears a little smaller than the other. I also have chronic sinusitis on my RH side. I noticed a marked change in my eyesight (RH eye) when I was 13."L$I'm not certain this is really associated with the problem. Photographs of me around this time show a remarkable change in my face over these 3 years. "M&"N%"O%"P%"Q% "R$ "S$"T%"U%"V%"W% "X&"Y% "Z$"[% "\$"]% "^$"_% "`$ "a$"b%"c% "d$"e% "f$"g&The condition was progressing and active between age 10 and 13. It has remained fixed and dormant since with no neurological problems. The condition affects the RH side of my forehead and scalp also. The 'Coup de sabre" mark would be clearly visible excep"h&I'm probably going to be changing my email address soon, My husband and I work in the USA at the moment, and we will be leaving here in the next few months. I will advise you of the new address. I can forward a picture if you wish, where to? JONSTONE@MART "i& "j$"k%"l%"m% "n$"o% "p$"q%~ ##@T@#$Adrienne Wilson*#$!51 Kiwi Esplanade, Mangere Bridge#$Auckland #$#$ New Zealand #$ #$#$hooloovoo_@hotmail.com~ # #2@# $Female# $Right# $ Parry-Romberg# $ #$#$ Skin Changes+#$"A 'crease' on my forehead, atrophy #$#+"@+&@!#+@$ D#D##% #$Left #$Both#% #$ #$#% #$ #$#% #$ # $#!$Hazel#"$Hazel ##$#$%#%$xa tiny patch (about the size of a 5 cent coin is blonde and frizzy, while the rest of my hair is dark brown and straight#&% #'##(# #)$#*% #+$ #,$ #-$ #.$ #/##0%#1%~ #2#"@!#33$3 D#2D# #4$ #5$~ #6*@#7%#8%#9%#:%V#;&MSensitivity to light and sound, visual disturbances, trouble speaking, nausea#<%C#=$:On the left side of face and head, doctors havn't named it #>$#?%;#@$2Not sure, but I had braces on my teeth for 3 years #A$#B%H#C$?left side of lips on top and bottom are thinner than right side#D%A#E$8hair doesn't grow as fast or as thick on my left eyebrow#F%]#G$Tusually only during migraine, but my left eye gets tired more quickly than the right #H$#I% #J$ #K$ #L$ #M&#N%#O%#P%#Q% #R$ #S$#T%#U%#V%#W% #X&#Y% #Z$#[% #\$#]% #^$#_% #`$ #a$#b%#c%SURGERYa#d$XHad tonsels removed, complications during surgery, happened around the time of PRS onset#e% #f$ #g& #h& #i& #j$#k%#l%#m% #n$#o% #p$#q%~ $#W@$$Serene Oh Hwei Fern&$$BLK 435 YISHUN AVE 6 #09-2102 $$ $$$$ Singapore$$760435 $$$$donb@blackmood.com~ $ #5@$ $Female$ $Right$ $ Parry-Romberg$ $ $$$$ Skin Changes $$ $$$+&@+1@!$+@% D$D$$% $$Left$$Lower$% $$ $$$% $$ $$$% $$ $ $$!$Brown$"$Brown $#$$$% $%$$&% $'#$(# $)$$*% $+$ $,$ $-$ $.$ $/#$0%$1%~ $2#2@!$33@'3 D$2D$T$4$KI DON'T REALLY KNOW THE WORDS TO DESCRIBE. NO DOCTORS HAVE DESCRIBED BEFORE $5$Left~ $6*@$7%$8%$9%$:%$;&NECK AND SHOULDER ACHES. SOMETIMES FEELS THAT THE VISION OF MY LEFT EYE IS POORER. SOMETIMES I SEE THAT THE WHOLE PLACE IS LIKE A WAVE PASSING. SOMETIMES I CAN FEEL SOMETHING RUNNING ACROSS MY HEAD.$<%r$=$iIT'S ON THE LEFT SIDE OF MY FACE. SOMETIMES IT AFFECT MY JAW THAT I CAN'T OPEN MY MOUTH. AND I GET SPASM. $>$$?% $@$ $A$$B% $C$$D% $E$$F%$G$AS MENTIONED ABOVE $H$$I%j$J$aSPASM OF THE LEFT SIDE OF THE TONGUE. WHEN I STICK OUT MY TONGUE, IT'S POINTING TOWARDS THE LEFT.$K$I'M NOT SURE IF THIS IS RELATED TO PRS, I'VE GOT SWALLOWING PROBLEM. INTIALLY, I EASILY GET CHOKE ON RICE OR SMALL PARTICLES LIKE BISCUITS. I'VE DONE INVESTIGAIONS AND WAS TOLD THAT MY ESOPHAGEAL MUSCLES ARE WEAK$L$I DID NOT GO FOR FURTHER CHECKS ON IT AS I DEVELOPED WAYS TO PREVENT MYSELF FROM CHOKING. NOW, I TAKE EXTRA EFFORT TO MAKE SURE I SWALLOW PROPERLY. AND THUS I DON'T GET CHOKE AS OFTEN. $M&$N%$O%$P%$Q%$R$EMG, FLUOROSCOPY $S$$T%$U%$V%$W%$X&ACCUPUNCTURE-I'VE STOPPED AS I DON'T HAVE THE TIME TO GO. I FELT IT'S QUITE EFFECTIVE. BUT DURING THE TREATMENT, IT'S RATHER UNTOLERABLE. PHENYTOIN AND ANAREX- I ONLY TAKE THESE PRN. I FIND THAT IT'S EFFECTIVE AS WELL.$Y% $Z$$[% $\$$]% $^$$_% $`$ $a$$b%$c% $d$$e% $f$$g&I'm Serene Oh from Singapore. I think I've missed out something which may or may not be relevant. I had a lipoma removed in late 1997. It's located near my right scapular. Guess that's about all. Really hope to hear from you soon. $h& $i& $j$$k%$l%$m% $n$$o% $p$$q%~ %#S@#%$Madeleine de Rauville-Raal+%$"41 Sheriff Road Robindale Randburg %$%$ Johannesburg%$ South Africa %$%$+27 11 7825255 (h)'%$madeleine3@freemail.absa.co.za~ % #A@% $Female% $Right% $ Parry-Romberg% $ %$PFHA%$Other%$Cramping/muscle spasm in cheek/jaw area on right hand side of face. When I ate, ie chewed on something, it was as if my jaw would lock and I could not open my mouth without forcing it open/my teeth apartt%$kIt was unlike anything I had ever experienced before. Visual defect started - slowly - a few month's later.%+1@+4@!%+@& D%D%%%%$Right%$Lower%% %$ %$%% %$ %$%% %$ % $%!$Brown%"$Brown %#$%$% %%$%&% %'#%(# %)$%*% %+$ %,$ %-$ %.$ %/#%0%%1% %2#%3# %4$ %5$ %6*%7%%8%%9%%:% %;&%<%%=$Right at the location of the atrophy, I had, in my time, excruatiatingly sore spasms. These were so bad I would sometimes think that I might pass out from the pain. They would come in clusters, sometimes hitting immediately one after the other.%>$The worst year was 1987 (I was 20). The muscle(s) in the jaw would seem to cramp, voluntarily, into a hard ball and I would try to massage it but nothing seemed to help. As I say, the pain was unbearable.%?% %@$ %A$%B% %C$%D% %E$%F% %G$ %H$%I% %J$%K$It seems as if my PRS has now burned out ie. visually it has stabilised and the cramping is basically over. However, sometimes (and it seems that this occurs when I am tired, cold or, strangely enough, on certain medication/antibiotics),%L$I get a bit of minor cramping/twitching in my jaw. Sometimes I notice a tiny bit of saliva shooting out my mouth from the rhs (as if a saliva gland is blocked or something). %M&%N%%O%%P%%Q%%R$I have been told that this is because the disease started taking effect when I was 17/18 years of age ie. bone formation was complete. %S$%T%%U%%V%%W%%X&Two lots of reconstructive surgery/treatments: 1. Liposuction and re-injection of harvested fat into the area. This was under GA and the fat re-absorbed totally within about 3 or 4 months ie. was totally unsuccessful. 2. Recently ie. within last few month%Y% %Z$%[% %\$%]% %^$%_% %`$ %a$%b%%c%%d$?? - FirstlyI was in France, had just finished school, and it was freezing cold. On my first night there I noticed the first jaw spasm/cramp.+ Fall when I was a little girl, cut and stitches on right chin%e% %f$ %g& %h&%i&Please let me know if there is ANYTHING else you would like to know.... nothing concerns me, I just want to know more about PRS incl, mainly, WHAT causes it!! Good luck!! %j$%k%%l%%m% %n$%o% %p$%q%~ &#U@&$Craig Mitchell&$ PO Box 3246&$ Westbrook&$Natal&$ South Africa &$4400&$+27 83 784 1005&$for_piglet@hotmail.com~ & #:@ & $Male & $Left& $Romberg& $ &$&$ Skin Changesi&$`My top lip on the left was discolored and there was visibly less tissue there than on the right. &$&+"@+(@!&+@' D&D&&% &$Left&$Lower&% &$ &$&% &$ &$&% &$ & $&!$Hazel&"$Hazel &#$&$% &%$&&% &'#&(# &)$&*% &+$ &,$ &-$ &.$ &/#&0%&1% &2#&3# &4$ &5$ &6*&7%&8%&9%&:% &;&&<%&=$I occasionally have spasms in my neck on the left side which causes the gland behind the ear to inflame and is very painfull. It usually only lasts a few seconds. My left ear is also very sensitive and the slightest bump can be very painfull. &>$&?% &@$ &A$&B%M&C$DThinner lip on the top left side and no facial hair will grow there.&D% &E$&F%Q&G$HNot so much my vision but my left eye is slightly lower on the left side &H$&I% &J$B&K$9My left ear is noticably smaller with little soft tissue. &L$ &M&&N%&O%&P%&Q% &R$ &S$&T%&U%&V%&W%r&X&iHave had large fatty tissue taken from my back on the left side and grafted from within to my left check.&Y% &Z$&[% &\$&]% &^$&_% &`$ &a$&b%&c% &d$&e% &f$ &g& &h& &i& &j$&k%&l%&m% &n$&o% &p$&q%~ '#`@'$ Robin Nelson*'$!18 St. Tropez, 93 Wierda Rd. East'$Sandton'$Gauteng'$ South Africa '$2196'$082-332-8293 (cell)'$rcee7@yahoo.com~ ' #D@' $Female' $Right' $ Parry-Romberg' $ '$'$ Skin Changes'$no problems just a very skeletal looking face but on each side not just on one side. I do experience dull aching pain in my left leg but that's about it. '$'+4@+A@!'+,@( D'D''% '$Both'$Lower'% '$ '$'% '$ '$'% '$Left' $Upper'!$Hazel'"$Hazel '#$'$% '%$'&% ''#'(# ')$'*% '+$ ',$ '-$ '.$ '/#'0%'1%~ '2#B@!'330@)3 D'2D' '4$ '5$Both~ '6*@'7%'8%'9%':%';(haven't been to a doctor about headaches, they seem to hit me when I concentrate really hard like doing crosswords or reading intensely, get motion sickness at the slightest movements,this only started four years ago, no aerobics as I get nauseous and I h'<% '=$ '>$'?% '@$ 'A$'B% 'C$'D% 'E$'F%'G$Well actually that's hard to say. According to optometrist I have perfect vision but I see tiny black spots floating around when I look at a solid white surface.'H$. I also feel a tingling in my eyes(both)and they will run water at the inside corner which if I apply any pressure to the area it hurts.'I% 'J$ 'K$ 'L$ 'M&'N%'O%'P%'Q%D'R$;I am just beginning my journey, nothing done at this stage. 'S$'T%'U%'V%'W%^'X&UI am scheduled to have fat injections upon consultation with my third opinion doctor.'Y% 'Z$'[% '\$']% '^$'_% '`$ 'a$'b%'c%_'d$VI say no but I have often wondered about the meningitis that occured at the age of 12.'e% 'f$'g&As I was saying before the reason I went to the doctor in the first place was to see if there was anything that could be done to "fatten" up my jaws. Also I got tired of being stared at as I have never been sick since the age of 12 when I caught spinal me 'h&'i&I have no concerns. I just want to say thank you for the research you are doing and the survey is a wonderful start or addition whichever you choose. I could not find any research on Romberg's in 1994, the biggest medical journal at my local library had n 'j$'k%'l%'m% 'n$'o% 'p$'q%~ (#`@($ Marijke Zoon($ Kamerkamp 13($ Velserbroek ($($The Netherlands($1991 DA($31 23 568 7622"($Marijke.Zoon@KPNQwest.com~ ( #A@( $Female( $Right( $Romberg( $ ($($ Skin Changes($After a very stressful period in my life, I lost many kilos and when the situation was normal again the left part of my face stayed skinny ($(+>@+@@!(+@) D(D((% ($Left ($Both(% ($ ($(% ($ ($(% ($ ( $(!$Green("$Green (#$($% (%$(&% ('#((# ()$(*% (+$ (,$ (-$ (.$ (/#(0%(1% (2#(3# (4$ (5$ (6*(7%(8%(9%(:% (;&(<% (=$ (>$(?%(@$Not any more but I used to have pains around the area of my ear and my jaw used to be very sensitive (probably because there was not too much fat left there). (A$(B% (C$(D% (E$(F% (G$ (H$(I%(J$According to the Chinese doctor, the left side of my tongue shows less "fat" as the other side. There is a disbalance there as well. (K$ (L$ (M&(N%(O%(P%(Q%(R$wAt the Chinese doctor they looked at the Ying & Yang balance of my organs by looking to my tongue and feeling my pulse. (S$(T%(U%(V%(W%(X&Acupuncture in my face - until now 8 treatments. I only go once a week (because of work) but a treatment every other day would be the best. During and after the treatment (of 30 minutes) that area in my face is really glowing and more fat developed in tha(Y% (Z$([% (\$(]% (^$(_% (`$ (a$(b%(c%U(d$Lmaybe the stressful period in my life (for about 6 months) of loosing weight(e% (f$ (g& (h&(i&You can use my input for your research but I don't want to be questionned my other victims because I don't want to be too busy with this problem anymore. So I would appreciate to treat my private information confidential. thank you and good luck with the  (j$(k%(l%(m% (n$(o% (p$(q%~ )#I@)$ Ines Braham )$ines)$Tunis )$)$Tunisia )$2033)$00 216 1 296751)$i_braham@yahoo.fr~ ) #7@) $Female) $Right) $ Parry-Romberg) $ )$)$ Skin Changes)$za very strong asymetry at thechin: like a very clear line in the middle of it: then a progressive atrophy of my left cheak )$)+*@+6@!)+"@* D)D))%)$Right)$Lower)%)$Right)$Lower)% )$ )$)% )$ ) $)!$Brown)"$Brown )#$)$% )%$)&% )'#)(# ))$)*% )+$ ),$ )-$ ).$ )/#)0%)1%~ )2#4@!)33@+3 D)2D) )4$ )5$Both~ )6*@)7%)8%)9%):% );&)<% )=$ )>$)?%)@$when i was 14 years old, I went to an orthodentist to fix my teeth because i had ; they said:"an awry smile" Now the gum around my teeth are becoming smaller and tthe teeth more shown()A$gum's atrophy on the right side)B% )C$)D% )E$)F%P)G$GI always had a stonger short-sightedness at the right eye than the left )H$)I% )J$r)K$iI have one nail that seems to be disappearing: the index finger on my right hand is like becoming shorter )L$ )M&)N%)O%)P%)Q% )R$ )S$)T%)U%)V%)W% )X&)Y%)Z$may be one aunt: but she died young and she never had been diagnosed: every body just always used to ask her who hit her on the face when she was a child because of the asymetry on her face)[% )\$)]% )^$)_% )`$ )a$)b%)c% )d$)e% )f$J)g&AThank you for working on this research: I hope I've been helpful!)h&Hi, My first name is Ines; I hope I've been helpful; About my index finger: it began with the nail starting to be progressivly white: like taken off from the finger: and now of course it seems like the top of the finger is shorter and more thick: th)i&you can publish every thing in my concern: I can even send you some pictures if you want to show you the evolution of the atrophyP)j$GWhat is your first name? Is your finger shrunk or is it just your nail?)k%)l%)m% )n$)o% )p$)q%~ *#3@*$Jane Valerie Sandall-*$$9 Daubeney Gate, Shenley Church End,*$ Milton Keynes*$Bucks. *$UK*$MK5 6EH/*$&01908 505294 = home, work=01908 251600*$jane.sandall@eds.com~ * #G@* $Female * $Left * $PFHA* $*$Romberg*$ Skin Changes*$On Back below scapula *$*+@+9@!*+4@+ D*D**% *$Left *$Both*% *$ *$*% *$Left*$Chest*% *$ * $ *!$Blue *"$Blue *#$*$% *%$*&% *'#*(# *)$**% *+$ *,$ *-$ *.$ */#*0%*1% *2#*3# *4$ *5$ *6**7%*8%*9%*:% *;&*<% *=$ *>$*?%B*@$9misaligned on left side & front - both upper & lower jaws *A$*B%;*C$2i also have 2 romberg patches on my left upper lip*D% *E$*F%2*G$)my left eye is much weaker than my right. *H$*I% *J$ *K$ *L$ *M&*N%*O%*P%*Q% *R$ *S$*T%*U%*V%*W%*X&when i was about 13 i had live silicone injections into the romberg skin areas to try & plump them up but this failed because the silicone moved to the unaffected softer skin surrounding areas. i then had to have surgery to try & drain the silicone out bu*Y% *Z$*[% *\$*]% *^$*_% *`$ *a$*b%*c% *d$*e% *f$Z*g&Qi have my 'story' on the Rombergs Connection Personal Stories page called 'JANE'. *h&*i&i am very pleased that someone is taking an interest in Rombergs especially for the sake of children & young people who will have to endure living with it through the years where looks are so important (teens & twenties). my local GP had never heard of Ro *j$*k%*l%*m% *n$*o%*p$ Thank you*q%~ +#6@+$ Eileen Burns+$17 Kitchener Street,+$Wishaw+$ Lanarkshire +$UK+$ML2 7JQ+$ 01698 355138+$scothealth@aol.com~ + #?@+ $Female+ $Right + $PFHA+ $+(En coup de sabre+$ Skin Changes +$ +$++@+@!++@, D+D++% +$Left+$Upper+% +$ +$+% +$ +$+% +$ + $+!$Green+"$Green +#$+$% +%$+&% +'#+(#/+)$&Not seizures - shaking when she had ME+*% ++$Both +,$Both +-$8 +.$ +/#+0%+1%~ +2#=@!+338@-3 D+2D+I+4$@more coming from eye and forehead deep throbbing makes you dizzy +5$ +6*+7%+8%+9%+:% +;&+<%0+=$'left nasal and forehead also inside eye +>$+?%<+@$3a lot of dental treatment particularly on left side +A$+B% +C$+D% +E$+F%+G$a lot of eye problems, typical dilation plus became aware of soft eye about 3 yes ago, hypotonic eye, choroidal folds at posterior, psuedo pterygium since i was about 19 +H$+I% +J$k+K$bBasically more eye problems have been used in a bit of research by Dr Dudgeon, Gartnavel Hospital. +L$ +M&+N%+O%+P%+Q%B+R$9some sort of scan done on eye in aberdeen royal Infirmary +S$+T%+U%+V%+W%$+X&diuretic for eye didnt work+Y% +Z$+[% +\$+]%H+^$?mums side of family had problems with bone growth over ears etc+_%+`$after diagnosed +a$+b%+c%9+d$0psuedo pterygium started about same time as M.E.+e% +f$+g&As I am from Lanarkshire I would be willing to assist with research, I have a lot of my own medical noted regarding this condition. +h&+i&Hi I have never had epilesy although I have suffered shalking and a lot of twitches etc particulary in the early years of my ME and when it was quite bad.I had a starnge experience when I wa on an antibiotic years ago, I had collapsed in bathrom w5+j$, Family queries. Is it just a straight line?+k%+l%+m% +n$+o% +p$+q%~ ,#I@,$Sylvie Adele Halsey,$Melrose The Drive,$Burnham On Sea,$Somerset ,$UK,$TA8 2PH,$ 01278 788584',$halsey@126thedrive.fsnet.co.uk~ , #&@, $Female, $Right, $ Parry-Romberg, $ ,$,$ Skin Changes ,$ ,$,+@+@!,+@- D,D,,%,$Right,$Lower,% ,$ ,$,% ,$ ,$,% ,$ , $,!$Brown,"$Brown ,#$,$% ,%$,&% ,'#,(# ,)$,*% ,+$ ,,$ ,-$ ,.$ ,/#,0%,1% ,2#,3# ,4$ ,5$ ,6*,7%,8%,9%,:% ,;&,<% ,=$ ,>$,?% ,@$ ,A$,B%F,C$=Thinning on right side of upper lip. Leads to a crooked smile,D% ,E$,F%,G$Has Duane's syndrome ,H$,I% ,J$O,K$FThinning of the Right nostril and a line along the chin -coup de sabre ,L$ ,M&,N%,O%,P%,Q% ,R$ ,S$,T%,U%,V%,W%%,X&surgery booked for August 01,Y% ,Z$,[% ,\$,]%],^$TFather suffers cluster headaches and uncle (Fathers brother has trigeminal neuralgia,_% ,`$ ,a$,b%,c% ,d$,e% ,f$,g&Forceps delivery with mark to R side of face. Left eye effected by Duane's syndrome.Currently under the care of Mr N mercer at Frenchay Hospital in Bristol. ,h&,i&Sylvie and family are pleased to hear of your research and offer to be of any further assistance.We beleive there are few cases in G.B. ,j$,k%,l%,m% ,n$,o%,p$Thanks,q%~ -#K@-$ Ann Dundon-$239 DITCHFIELD ROAD-$WIDNES-$CHESHIRE -$UK-$WA8 8HY -$-$WIF93@YAHOO.COM~ - #F@- $Female- $Right - $PFHA - $$-$ Skin Changesa-$XI WAS TOLD I WAS BORN WITH THIS CONDITION MY FACE HAS BEEN DIFFERENT ON ONE SIDE ALWAYS. -$-++B@!-+B@. D-D--%-$Right-$Lower-%-$Right -$-%-$Right -$Both-%-$Right- $Lower -!$Blue -"$Blue -#$-$%Q-%$HAT THE BACK OF MY HEAD AND UNDERNEATH I DO NOT KNOW IF THIS IS RELEVANT.-&% -'#-(#Q-)$HNONE DO YOU MEAN JERKING FOR THE QUESTION UP ABOVE IT YES EVERY SO OFTEN-*% -+$Both-,$Right --$8 -.$ -/#-0%-1%~ -2#@!-33@/3 D-2D--4$THE HEADACHES VARY ONE IS LIKE MY SKULL IS CRUSHING IN AT THE SIDES. I HAVE BAD HEADACHES OVER MY TEMPLE NOW DUE TO THE ATROPHY STARTING ALL OVER AGAIN. -5$Both~ -6*?-7%-8%-9%-:%7-;(.JAW ACHE, PAIN IN THE RIGHT EYE, FEELING TIRED-<%-=$BEFORE MY OPERATIONS I HAD FACIAL PAIN ON THE RIGHT SIDE AND A LOT OF TWITCHING WHEN THE ATROPHY WAS MOST ACTIVE. NOW I ALWAYS HAVE FACE PAIN AND TINGLING DUE TO THE OPERATIONS ->$-?%F-@$=TEETH ON THE RIGHT SIDE ARE DIFFERENT PLUS GUMS ARE DIFFERENT -A$-B%-C$}MOUTH WAS TURNED UP BEFORE THE OPERATION AND WAS DISCOLOURED IN THE CORNER BROWN. I ALSO HAVE A HOLE IN THE ROOF OF MY MOUTH.-D%S-E$JEYBROWS ARE NOT EQUAL HAIR TAKES ITS TIME TO GROW IF AT ALL VERY SENSITIVE-F%-G$MY RIGHT EYE IS TURNED IN (I HAVE BEEN ARGUING WITH DOCTORS EVER SINCE I CAN REMEMBER THAT THE EYE IS CONNECTED WITH MY PROBLEM. THEY HAVE NOW ADMITTED YES IT IS AND IS NOW DETERIATING MORE I AM LOSING THE SIGHT IN IT MORE EACH DAY.-H$AFTER MY FOURTH OPERATION I WOKE UP WITH DOUBLE VISION WHICH IS NOW PERMANENT UNTIL THE ATROPHY HAS FINNISHED THE EYE OF ONCE AND FOR ALL. I ALSO HAVE NOW BEEN TOLD I HAVE A RARE SPOT IN THERE. THEY CANNOT SEE RIGHT TO THE BACK OF THE EYE.-I%A-J$8SIDE OF THE TONGUE NOT THE SAME SHAPE AS THE OTHER SIDE.h-K$_I HAVE HAD MANY AN EMOTIONAL TIME TRYING TO EXPRESS MY CONCERN OVER THE EYE. NOW IT IS TO LATE.-L$EARS CAN BE PAINFUL. AS I HAVE MENTIONED MY ATROPHY HAD SUPPOSED TO HAVE BURNT IT SELF OUT. IT HAS NOW STARTED BACK UP ATTACKING MY EYE SOCKET AND TEMPLE AND I HAVE A FEW SPASMS WITH MY CHIN NOW. -M&-N%-O%-P%-Q% -R$ -S$-T%-U%-V%-W% -X&-Y% -Z$-[% -\$-]%-^$Nervous system-_% -`$ -a$-b%-c% -d$-e% -f$ -g& -h& -i&-j$Epilepsy query-k%-l%-m% -n$-o% -p$-q%~ .#O@.$ Nicola Wyatt#.$58 Clarence Road, Rayleigh .$.$Essex .$UK.$SS6 8SQ.$ 01268 772930#.$wyatt@clarence.fsnet.co.uk~ . #:@. $Female. $Right. $Romberg. $ .$.$ Skin ChangesD.$;Dark smudged appearance on skin (chin) - bruised appearance .$.+"@+*@!.+@/ D.D..% .$Left .$Both.% .$ .$.% .$Left .$Both.%.$Right. $Upper .!$ ."$ .#$.$% .%$.&% .'#.(# .)$.*% .+$ .,$ .-$ ..$ ./#.0%.1% .2#.3# .4$ .5$ .6*.7%.8%.9%.:% .;&.<%.=$An aching feeling on th eleft hand side of my face, in my chin, cheekbone and by my ear. Sometimes I feel tightening sensations .>$.?% .@$ .A$.B% .C$.D% .E$.F% .G$ .H$.I% .J$ .K$ .L$ .M&.N%.O%.P%.Q%Z.R$QNone other than recent photographs to compare with more to be taken in the future .S$.T%.U%.V%.W% .X&.Y% .Z$.[% .\$.]% .^$._% .`$ .a$.b%.c%.d$ Post partum.e% .f$A.g&8Lower back also, left side, ribcage on my left hand side.h&I've had this syndrome which has lain dormant for many years . Since having 2 children and having natural menstrual cycles other areas of my body and face have been affected. I have now returned to taking the combined contraceptive pill in the hope iot bu .i& .j$.k%.l%.m%".n$Spoke at length on phone..o% .p$.q%~ /#@X@/$ Diana Mann/$Dapple Lea, Mill Road/$ Peasenhall/$Suffolk IP17 2LW /$UK /$/$ 01728 660527 /$~ / #K@ / $Male/ $Right/ $Romberg/ $ /$PFHA/$ Skin Changes#/$Line then a darker pigment /$/+@+$@!/+@1 D/D//%/$Right /$Both/% /$ /$/% /$ /$/% /$ / $/!$Brown/"$Brown /#$/$% /%$/&% /'#/(# /)$/*% /+$ /,$ /-$ /.$ //#/0%/1%~ /2#$@!/33@13 D/2D//4$Phenobarbitone as a child. Constant dull headache. Intermittently very intense pain over right eye. Nausea, photophobia, has to sit up /5$Both~ /6*@/7%/8%/9%/:% /;&/<%%/=$Feels weird - load of cement />$/?%/@$Dentures when 11. /A$/B%/C$Thin on right side/D%7/E$.Right eyebrow - hairs don't start until middle/F%'/G$Scar tissue on right eye - can /H$/I%/J$Wasted on right-/K$$Bald patch where rombergs is in head /L$ /M&/N%/O%/P%/Q% /R$ /S$/T%/U%/V%/W% /X&/Y% /Z$/[% /\$/]%;/^$2Mother's side had Huntingtons Chorea, Mum diabetic/_% /`$ /a$/b%/c%//d$&? Measles and Scarlet fever age 5 or 6/e% /f$ /g& /h& /i& /j$/k%/l%/m% /n$/o% /p$/q%~ 0#@_@0$Victoria Norrell0$24 Worthing Road0$ East Preston0$ West Sussex 0$UK0$BN16 1AZ 0$!0$vickinorrell@hotmail.com~ 0 #6@0 $Female0 $Right0 $ Parry-Romberg0 $ 0$0$ Skin Changes 0$ 0$~ 0+"@ 0+0+0%0$Right 0$Both0% 0$ 0$0% 0$ 0$0% 0$ 0 $ 0!$Blue 0"$Blue 0#$0$% 0%$0&% 0'#0(# 0)$0*% 0+$ 0,$ 0-$ 0.$ 0/#00%01% 02#03# 04$ 05$ 06*07%08%09%0:% 0;&0<% 0=$ 0>$0?%,0@$#Very Uneven on the upper right side 0A$0B%)0C$ Severe Wasting of top right side0D%0E$whitening of hair0F% 0G$ 0H$0I%S0J$JWasting of right side of tongue (once described by a doctor as impressive)w0K$nI have hair loss the size of a 10 p on the right hand side. White patches of skin on back of neck and forehead 0L$ 0M&0N%0O%0P%0Q% 0R$ 0S$0T%0U%0V%0W% 0X&0Y% 0Z$0[% 0\$0]%#0^$my aunt has a cleft palate0_% 0`$ 0a$0b%0c4INJURY _SCRATCH0d$I was hit in the forehead (right side) by a ball and the symptoms appeared as the bruising went away. The bruise lasted well over 6 months0e% 0f$ 0g& 0h& 0i& 0j$0k%0l%0m% 0n$0o% 0p$0q%~ 1#@`@'1$Tina Frances Michelle Paterson$1$70 ARDEN ROAD RUBERY REDNAL1$ BIRMINGHAM 1$ 1$UK1$B45OJA1$ 0121 6245456#1$gmccarron57@currantbun.com 1 #1 $Female1 $Right1 $ Parry-Romberg1 $Romberg1(En coup de sabre1$ Skin Changes>1$5HAIR LOSS SMALL BALD PATCH ON RIGHT HAND SIDE OF HEAD 1$1+@+@!1+?2 D1D11%1$Right 1$Both1% 1$ 1$1% 1$ 1$1% 1$ 1 $1!$Brown1"$Brown 1#$1$% 1%$1&% 1'#1(# 1)$1*% 1+$ 1,$ 1-$ 1.$ 1/#10%11%~ 12#.@!133(@43 D12D1}14$tSICKNESS, BLURRED VISION, LOSS OF APPITITE, SHAKES, DOTTED VISION,SEVERE THUMPING IN FOREHEAD AND BACK OF RIGHT EYE.15$Right~ 16*@17%18%19%1:%61;(-TINGLING AND NUMBNESS DOWN RIGHT SIDE OF BODY1<%/1=$&RIGHT SIDE, DOCTOR HAS NO EXPLAINATION 1>$1?%`1@$WDENIST ADVISED ME THAT MY JAW AND TEETH WERE OUT OF LINE PROBERBLY DUE TO MY CONDITION. 1A$1B%?1C$6THE TOP LIP ON RIGHT HAND SIDE SEEMS TO BE MORE RAISED1D%T1E$KDENT ON FOREHEAD BY EYEBROW ON RIGHT HAND SIDE AND PART NONE GROWTH OF BROW1F%:1G$1CATTERACT IN LEFT EYE BLURRED VISION IN RIGHT EYE 1H$1I% 1J$ 1K$ 1L$ 1M&1N%1O%1P%1Q% 1R$ 1S$1T%1U%1V%1W%1X&CORRECTIVE SUGERY WAS UNDERTAKEN AT WORDSLEY HOSPITAL STOURBRIDGE BUT WAS NOT A COMPLETE SUCCESS, NO-ONE AS BOTHERED WITH ME SINCE.1Y% 1Z$1[% 1\$1]%H1^$?COUSIN HAS DEFORMATY OF CHEST BONES/ COUSIN WITH CERIBAL PAULSY1_% 1`$ 1a$1b%1c% 1d$1e% 1f$1g&INDENTATION ON RIGHT SIDE TOP HEAD, THROUGH FOREHEAD, EYEBROW AND NOSE. NO GROWTH OF HAIR WHERE INDENTATIONS ARE (HAIR, BROW, EYELASHES. THE SPECLIALIST WHO WAS DEALING WITH ME AS A CHILD ADVISED MY MOTHER THAT IT WAS CALLED A (COUPE DE SABRE) THE EASY WAq1h&hI WOULD LIKE TO LEARN MORE ABOUT MY CONDITION AS I DONOT UNDERSTAND WHAT IT IS OR WHY. TEL 0121 244 63341i&I WOULD BE GRATEFUL IF YOU COULD HELP ME WITH SOME OF MY QUESTIONS AND CONCERNS. I WOULD HAVE NO OBJECTION TO YOU CONTACTING ME OR YOU VEIWING MY PHOTO'S IF THE HOSPITALS ALLOW. MANY THANKS TINA PATERSON. 1j$1k%1l%1m% 1n$1o% 1p$1q%~ 2#b@2$Lauren Couchoud2$34 westlea Ave2$ Harrogate2$ Yorkshire 2$UK2$hg2 0at 2$&2$jason.couchoud@btinternet.com~ 2 #5@2 $Female2 $Right2 $En coup de sabre2 $ 2$2$ Skin Changes 2$ 2$2+*@+5@!2+ @3 D2D22%2$Right2$Upper2% 2$ 2$2% 2$ 2$2% 2$ 2 $ 2!$Blue 2"$Blue 2#$2$% 2%$2&% 2'#2(# 2)$2*% 2+$ 2,$ 2-$ 2.$ 2/#20%21% 22#23# 24$ 25$ 26*27%28%29%2:% 2;&2<% 2=$ 2>$2?% 2@$ 2A$2B% 2C$2D%12E$(fat has gone under half of my right brow2F%2G$When I was 18 I developed optic nuritis. But a very atypical case. It VERY slowly progressed over a 6 month period- untill my once perfect sight was so far gone I could only tell light from dark. 2H$2I% 2J$ 2K$ 2L$ 2M&2N%2O%2P%2Q%2R$ LP - normal 2S$2T%2U%2V%2W%2X&Steriod drip. 1 gram a day for 3 days the reconstructive surgery was to close the gap of my missing lashes. I would like to know if it is possible to have reconstructive surgery for the fat missing in my brow and forhead.2Y% 2Z$2[% 2\$2]% 2^$2_% 2`$ 2a$2b%2c% 2d$2e% 2f$2g&When I was 18 I developed optic nuritis. But a very atypical case. It VERY slowly progressed over a 6 month period- untill my once perfect sight was so far gone I could only tell light from dark. After 2 treatments cycles of solumedrol, 1 gram a day for 32h&When I was 3 years old I lost my eyelashes on the right eye lid. I had no injury or noticable infection, they slowly fell out. and the eye lash folicals are also gone. A biopsy of my lid found scar tissue on the inside of the lid. No cause was determined  2i& 2j$2k%2l%2m% 2n$2o% 2p$2q%~ 3#?3$Theresa Hildebrand3$4106 W. 87th St3$Chicago3$Illinois 3$USA3$606523$ 773-838-12433$auntie_5@yahoo.com~ 3 #A@3 $Female3 $Right3 $Romberg3 $3)linear scleroderma3$ Skin Changes 3$ 3$3+@+@!3+4 D3D33%3$Right 3$3%3$Right3$Upper3% 3$ 3$3% 3$ 3 $ 3!$Blue 3"$Blue 3#$3$% 3%$3&% 3'#3(# 3)$3*% 3+$ 3,$ 3-$ 3.$ 3/#30%31% 32#33# 34$ 35$ 36*37%38%39%3:% 3;&3<% 3=$ 3>$3?%J3@$AJaw is smaller on the affected side causing crowding of the teeth 3A$3B%^3C$ULips are affected by the atrophy. One side of the mouth looks smaller than the other.3D% 3E$3F% 3G$ 3H$3I%:3J$1Affected side of tongue is smaller than the other 3K$ 3L$ 3M&3N%3O%3P%3Q% 3R$ 3S$3T%3U%3V%3W% 3X&3Y% 3Z$3[% 3\$3]% 3^$3_%73`$.Trauma to chin at age 3, requiring 8 stitches. 3a$3b%3c% 3d$3e% 3f$ 3g& 3h& 3i& 3j$3k%3l%3m% 3n$3o%(3p$Thanks for co-ordinating survey3q%~ 4#@4$ Rita Bietry4$ 4505 ALPINE ROSE BEND4$ ELLICOTT CITY4$Maryland 4$USA4$210424$ 410-461-06204$rita@bietry.com~ 4 #I@4 $Female4 $Right4 $ Parry-Romberg4 $ 4$4$ Skin Changes 4$ 4$4+?@+@!4+95 D4D44%4$Right 4$Both4% 4$ 4$4% 4$Left 4$4% 4$ 4 $ 4!$Blue 4"$Blue 4#$4$% 4%$4&% 4'#4(# 4)$4*% 4+$ 4,$ 4-$ 4.$ 4/#40%41%~ 42#$@!433563 D42D4.44$%? MIGRAINE OFF/ON.HEADACHES ROUTINELY45$Right~ 46*@47%48%49%4:%14;&(FACIAL PAIN RADIATING ALONG ROMBERG LINE4<%-4=$$? PAIN AND SENSITIVITY ON RIGHT SIDE 4>$4?% 4@$ 4A$4B% 4C$4D%;4E$2? DISCOLARATION AND LESS HAIR IN THE AREA AFFECTED4F%14G$(? PAIN IN MY RIGHT EYE WHEN UNDER STRESS 4H$4I% 4J$N4K$E? MY CHIN ON THE RIGHT SIDE OF IT HAS THE SAME INDENT AS MY FOREHEAD. 4L$ 4M&4N%4O%4P%4Q%4R$ Bone Scan 4S$4T%4U%4V%4W% 4X&4Y% 4Z$4[% 4\$4]% 4^$4_% 4`$ 4a$4b%4c%y4d$p? PECTORAL MUSCLE WAS BELIEVED A POSSIBLE EFFECT OF POLIO. THE FACIAL FEATURES STARTED AFTER MY FIRST PREGNANCY.4e% 4f$4g&? THANK YOU FOR TAKING THE TIME TO DO THIS SURVEY. i DO HOPE IT WILL BE A USEFUL RESOURCE FOR DOCTORS AS WELL AS A STARTING POINT FOR OTHER RESEARCH.IF YOU HAVE ANY FURTHER QUESTIONS PLEASE FEEL FREE TO CONTACT ME. 4h& 4i&j4j$aAge of onset 31. Diagnosis age 6. Description of lip problems. Left chest right face double check4k%4l%4m% 4n$4o% 4p$4q%~ 5#@5$Tammie D. Stammers5$189 Clay Hill Road5$Hartland5$Vermont 5$USA5$05048 5$&5$Tammie.DeGrasse@Dartmouth.Edu~ 5 #?@5 $Female5 $Right5 $Romberg5 (En coup de sabre 5$PFHA5$ Skin Changes 5$ 5$5+1@+8@!5+@6 D5D55% 5$Both 5$Both5% 5$ 5$5% 5$ 5$5% 5$ 5 $ 5!$Blue 5"$Blue 5#$5$% 5%$5&% 5'#5(# 5)$5*% 5+$ 5,$ 5-$ 5.$ 5/#50%51% 52#53# 54$ 55$ 56*57%58%59%5:% 5;&5<%q5=$hsometimes the nerves twitch on the affected side of my face. Feels like there is a burning there as well 5>$5?%15@$(gums appear to be receeding on left side 5A$5B%%5C$ lips very thin on left side5D%L5E$C have a "bald spot" on right eyebrow- where the en coup de sabre is5F%t5G$k? left eyelid doesn't work well, too much atrophy around eye. Vision seems to be getting worse on that side 5H$5I% 5J$ 5K$ 5L$ 5M&5N%5O%5P%5Q% 5R$ 5S$5T%5U%5V%5W%L5X&C fat injections to the left side of my face to even out the atrophy5Y% 5Z$5[% 5\$5]% 5^$5_% 5`$ 5a$5b%5c% 5d$5e% 5f$5g&? I have also had Systematic Lupus Erythematasis since I was about 13 years old. I don't know if they are connected or not, but it seems that way as in Lupus, the body attacks itself.5h&My face is affected on the right side of my forehead, and on the left side. The left side was mostly the chin, but has progressed up into the cheek and around my eye. Lupus diagnosed on bloods and symptoms too65i&-Right forehead, left forehead, cheek and chino5j$fIs she sure it affects both sides of face - see answers to face pain? How was diagnosis of Lupus made?5k%5l%5m% 5n$5o% 5p$5q%~ 6#@6$ Nicole Tully6$63 Second Avenue6$Roebling6$ New Jersey 6$USA6$085546$ 609-499-15366$yankee11@att.net~ 6 #*@6 $Female6 $Right6 $Romberg6 $ 6$6$ Skin Changes6$Change in Chin 6$6+"@+(@!6+@7 D6D66% 6$Left6$Lower6% 6$ 6$6% 6$ 6$6% 6$ 6 $6!$Brown6"$Brown 6#$6$% 6%$6&% 6'#6(# 6)$6*% 6+$ 6,$ 6-$ 6.$ 6/#60%61%~ 62# @!63373 D62D6 64$ 65$Both~ 66*@67%68%69%6:% 6;&6<% 6=$left 6>$6?%6@$'Probllems with teeth' 6A$6B% 6C$6D% 6E$6F% 6G$ 6H$6I% 6J$ 6K$ 6L$ 6M&6N%6O%6P%6Q% 6R$ 6S$6T%6U%6V%6W% 6X&6Y% 6Z$6[% 6\$6]% 6^$6_% 6`$ 6a$6b%6c% 6d$6e% 6f$"6g&See email from John Tully 6h& 6i&;6j$2Handedness? Upper or lower face? Teeth Description6k%6l%6m% 6n$6o% 6p$6q%~ 7# @7$ Clare Flaxman7$415 dale avenue7$mchenry7$Illinois 7$USA7$600507$ 815-578-10287$DEZZIE7@aol.com~ 7 #E@7 $Female7 $Right7 $ Parry-Romberg7 $7)linear scleroderma7$ Skin ChangesP7$Gdent running the length of my head and down my forehead. Coup de sabre. 7$7+=@+=@!7+8 D7D77%7$Right 7$Both7% 7$ 7$7% 7$ 7$7% 7$ 7 $ 7!$Blue 7"$Blue 7#$7$% 7%$7&% 7'#7(# 7)$7*% 7+$ 7,$ 7-$ 7.$ 7/#70%71%~ 72#?!733<83 D72D774$I have not had a migraine since 1984. I used to have the bright lights, I'd throw up, then sleep for hours to get thru them. I will answer the following as it was when I did have them. Evry week in past 75$Both~ 76* @77%78%79%7:% 7;&7<% 7=$ 7>$7?%7@$the teeth on the right side, seem to be falling out. I have only 2 bottom teeth on that side, and 3 top teeth have been replaced. 7A$7B%E7C$<top right lip is very thin I'm e mailing you a picture of me7D%$7E$the right one is less hairy7F%Z7G$Qboth of my eyes are getting worse quite fast. Not sure that it is related though. 7H$7I% 7J$7K$discoloration under my eye. When I squint in the sun, my right eye doesn't close. the right side of my face is thinner than the left. The eyes socket is different. 7L$ 7M&7N%7O%7P%7Q%7R$just one x ray 7S$7T%7U%7V%7W% 7X&7Y%f7Z$]my dad died of a brain heamorage as did his dad. Do you know if this is related to romberg's?7[% 7\$7]% 7^$7_%B7`$9bad soccer accident, after I was diagnosed with Romberg's 7a$7b%7c%~7d$uI noticed it during my third pregnancy, don't know if it's related. No significant change during the fourth pregnancy7e% 7f$7g&I fill out your survey and would like to send you these two pictures taked > today > [Unable to display image][Unable to display image] >7h&I really haven't noticed much change recently. I used to think it was stress related, but I've had alot of stress this past year with no apparent change. Thank goodness. I was a British citizen til 18 months ago. Was born in Iraq (oil field) don't know if 7i&-7j$$Pictures did n't come out - re-email7k%7l%7m%07n$'Dad died of haemorrhage - query related7o% 7p$7q%~ 8#"@8$ Angela Bright8$404 Rattan Dr.8$Victoria8$Texas 8$USA8$779018$(361) 576-32258$BrightAngela@aol.com~ 8 #@@8 $Female 8 $Left8 $ Parry-Romberg8 $ 8$8$ Skin Changes 8$ 8$8+1@+6@!8+@9 D8D88% 8$Left8$Lower8% 8$ 8$8% 8$ 8$8% 8$ 8 $8!$Hazel8"$Hazel 8#$8$% 8%$8&% 8'#8(# 8)$8*% 8+$ 8,$ 8-$ 8.$ 8/#80%81%~ 82#:@!833"@93 D82D8=84$4sensitivity to light and niose and intense throbbing 85$Left~ 86*@87%88%89%8:% 8;&8<%8=$left sided face pain at times near the cheek bone ...went to doctor he called it left sided face pain doesnt feel it is trig. neur. 8>$8?% 8@$ 8A$8B% 8C$8D% 8E$8F% 8G$ 8H$8I% 8J$8K$dizzines most days esp. when getting up fast but it isnt r/t BP (it was checked varios times to see if orthostatic and its not) I do have a brain lesion on the right(unaffected side) posterior horn internal capsle 8L$ 8M&8N%8O%8P%8Q%^8R$UI do have a brain lesion on the right(unaffected side) posterior horn internal capsle 8S$8T%8U%8V%8W% 8X&8Y% 8Z$8[% 8\$8]% 8^$8_%[8`$Rhit head on diving board when i was 13 and got stiches it was the top of left side 8a$8b%8c% 8d$8e% 8f$ 8g& 8h&8i&Dr. Stone would you please email me at brightangela@aol.com and tell me what does the posterior horn internal capsule control....what kind of s/s would I look for if the lesion is worsening? 8j$8k%8l%8m%~8n$u Hi! My name is Angela and I have PRS. I tried to look at your website, but it said it was down. Can you send me info8o%8p$Gave web address8q%~ 9#&@9$ Marilyn Neal9$2418 Cedar Hts. Dr.9$ Cedar Falls 9$Iowa 9$USA9$506139$ 319-277-5030 9$ggneal@cfu-cybernet.net~ 9 #K@9 $Female9 $Right9 $ Parry-Romberg9 $ 9$9$ Skin Changes 9$ 9$9+"@+0@!9+@; D9D99%9$Right 9$Both9% 9$ 9$9%9$Right9$Abdomen9% 9$ 9 $9!$Hazel9"$Hazel 9#$9$% 9%$9&% 9'#9(# 9)$9*% 9+$ 9,$ 9-$ 9.$ 9/#90%91%~ 92#G@!933B@;3 D92D994$My doctor says I have a "classic" migraine, one in which I sometimes see the colored lights, but it does not develop in to head ache pain. 95$~ 96* @97%98%99%9:%|9;&sI have a tingling sensation on varying parts of my body at times. They do not seem to be associated with headaches.9<% 9=$ 9>$9?%^9@$UMy teeth do not quite fit together properly. I have not had anything done about this. 9A$9B%F9C$=I have atrophy on the right side of both upper and lower lips9D%49E$+My right eyebrow is much lower than my left9F%9G$The vision in my right eye is not as good. My doctor blames this on the dryness that I have on the right side. My right eye is very recessed. 9H$9I% 9J$9K$I have tissue loss on my right side above my waist. It is like a deep crease. It has not caused me any medical problems that I know of. I have muscle spasms in my affected jaw.9L$It causes me to bite my lip or tongue. I think many of us have emotional problems that can go along with living with a facial difference. 9M&9N%9O%9P%9Q% 9R$ 9S$9T%9U%9V%9W%]9X&TI have had 2 major reconstructive surgeries and 2 follow up revisions for my atrophy9Y% 9Z$9[% 9\$9]% 9^$9_%I9`$@I did have a very bad fall as a child, but did not see a doctor. 9a$9b%9c% 9d$9e% 9f$9g&I am grateful to you for your interest in those of us with Rombergs Syndrome. Very often the medical community is not interested in us because we are so rare. I hope your survey goes well and will be looking forward to receiving the results of it. I am a  9h& 9i& 9j$9k%9l%9m%)9n$ Wanted to know if she could help9o%!9p$Pleased to have her help9q%~ :#*@:$Andrea M. Rodriguez:$234 N. Hawthorne Dr:$ South Bend:$Indiana :$USA:$46617:$ 219-233-9234:$nd234irish@aol.com~ : #7@: $Female: $Right: $Romberg: $:$Morphoea:$ Skin Changes :$ :$~ :+,@ :+:+:% :$Left :$Both:% :$ :$:% :$ :$:% :$ : $ :!$Blue :"$Blue :#$:$%Y:%$PNoticed that my hair has turned white in some areas on the left side of my scalp:&% :'#:(# :)$:*% :+$ :,$ :-$ :.$ :/#:0%:1% :2#:3# :4$ :5$ :6*:7%:8%:9%::% :;&:<%Y:=$PFacial pain happens mostly around the affected eye. Also facial pain due to TMJ. :>$:?% :@$ :A$:B%2:C$)The lips are thinner on the affected side:D%G:E$>The eyebrows diminished in some areas due to en coup de sabre.:F%:G$Since, I've gotten this disease, I got glasses and soon after that I had to get a new prescription because it was changing so rapidly. There are days when my eyes are more light sensitive than others :H$:I%>:J$5The left side of my tounge is smaller than the right.:K$Jaw pain!! A number of Parry Romberg's sufferers have TMJ or some sort of jaw problem. Which causes numerous amount of headaches. And because of that sometimes the ear can get bothered and it will be hard to hear. :L$ :M&:N%:O%:P%:Q% :R$ :S$:T%:U%:V%:W% :X&:Y% :Z$:[% :\$:]% :^$:_% :`$ :a$:b%:c% :d$:e% :f$:g&? I would like to know if others are having thyroid problems or esophageal problems. I would also want to know if the others have depression and/or anxiety(panic) attacks.:h&vI do want to thank you for doing this for us. For once we have someone who cares about us. Many thanks go out to you!! :i& :j$:k%:l%:m%,:n$#Do other people have panic attacks?:o%%:p$Globus -- go and see doctor.:q%~ ;#,@;$Jo-Ann D'Angelo;$5 Dorado Drive;$New York;$New York ;$USA;$10577;$ 914-761-3278;$dorad5@aol.com~ ; #L@; $Female; $Right ; $PFHA ; $$;$ Skin Changes ;$ ;$;+$@+&@!;+?< D;D;;% ;$Left ;$Both;% ;$ ;$;% ;$ ;$;% ;$ ; $;!$Brown;"$Brown ;#$;$% ;%$;&% ;'#;(# ;)$;*% ;+$ ;,$ ;-$ ;.$ ;/#;0%;1%~ ;2#4@!;33$@@3 D;2D;#;4$Classic Migraine with aura ;5$Left~ ;6*@;7%;8%;9%;:% ;;&;<% ;=$ ;>$;?% ;@$ ;A$;B% ;C$;D%H;E$?There are missing eyebrow and eye lashes where there is atrophy;F%;G$I have had three surgeries for double vision, all of which have been successful. I also had a spontaneous filtering bleb in my left eye which required a sclera graft because the eye pressure had dropped to about 5.;H$The graft was successful and the eye pressure is about 10. I wear a bandage lens for pain which does offer full relief from pain. I now have minocular double vision from my left eye only.;I% ;J$ ;K$ ;L$ ;M&;N%;O%;P%;Q%;R$ Positive ANA ;S$;T%;U%;V%;W%;X&In the early 1960's I was part of an Food & Drug Administration study on silicone and I had silicone injections in my face to correct the contours. I still have the silicone and it has not caused me any problems although it has hardened.;Y% ;Z$;[% ;\$;]% ;^$;_%z;`$qThere was some question that I had a head injury in kindergarten @ school but it was not clear how severe it was. ;a$;b%;c%';d$Not sure. Maybe a head injury.;e%W;f$NI test positive to lyme although I was never specifically diagnosed with lyme.U;g&LAnything you can do that would lead to research of this would be monumental.;h&Dr. Stone, Thank you again for responding. Yes, it would be a good follow-up point. In fact, I do have a positive ANA. Much appreciate your interest in this rare and curious disorder. With kind regards, jo-ann from New York;i&I have no ethical concerns about the study and willingly participated in the hopes that it will at the minimum raise awareness.. Thank you for acknowledging receipt of my survey. I was most pleased to > participate. There was something that crossed my ;j$;k%;l%;m% ;n$;o%;p$General Thankyou;q%~ <#.@<$ Pam UnRein <$ <$<$Kansas <$USA <$ <$<$pami48@hotmail.com~ < #C@< $Female< $Right< $ Parry-Romberg < $$<$OtherZ<$Qbluish coloration on jaw line and muscle spams in the jaw area on the right side. <$<+0@+8@!<+ @= D<D<<%<$Right <$Both<% <$ <$<% <$ <$<%<$Right< $Lower<!$Hazel<"$Hazel <#$<$%2<%$)have small bald spots on rt. side of head<&% <'#<(# <)$<*% <+$ <,$ <-$ <.$ </#<0%<1% <2#<3# <4$ <5$ <6*<7%<8%<9%<:% <;&<<%<=$I have not seen a doctor for this, sometimes my teeth on the right side are very sensitive to cold and when the weather gets cold, I have muscle jaw spasms on the rt. side, not as much as when I was a teen and in my early 20's.<>$They are better now since the fat injections, but I do have strange sensations on the right side of face. Sometimes a tick on the eyelid, upper and lower, rt. side.<?%+<@$"more sensitive to cold on rt. Side <A$<B%|<C$sRt. side on upper lip pulls up slightly and had lost fat tissue in the upper right lip, but have had that replaced.<D%<E$Lost eyebrow hair, has not grown back in and pulls up slightly on rt. side. Have lost most of all lower eyelashes, have not grown back.<F%<G$Rt. eye is not as clear as right because of the loss of fat tissue behind the eye and it has recessed quite a bit, I still can see with the eye though, and I have some double vision because it have recessed so much. <H$<I% <J$<K$I do have headaches, but not migrain, have lost the fat tissue in rt. foot on 3 middle toes, which are to the bone, have foot cramps often, the fat pad behind those 3 middle toes has also diminished. Sometimes get a severe pain in rt. ear during sleep.<L$Vision problems, some strange sensations on the rt. side of face, have had 15 fat injections surgeries on the rt side since age of 24.I also have rheynods syndrome, with no other attached diseases. <M&<N%<O%<P%<Q%3<R$*have had no tests run except, blood tests. <S$<T%<U%<V%<W% <X&<Y% <Z$<[% <\$<]% <^$<_% <`$ <a$<b%<c4INJURY _SURGERY<d$at the age of 14, I developed a fatty tumor (benign) on the left side of my chin develop, I had surgery by a general MD to remove the tumor and immediately the rt. side of the chin was indented, doctor thought he took too much tissue from the right side<e% <f$<g&After my tumor removal surgery, I had to more reconstructive surgeries to try to repair the rt. side of the chin because of the indention, which where unsuccessful and doctors thought they were causing nerve damage to my mouth, so they quit,<h&The Parry-Rombergs progressed from then on, but very gradual until after the birth of my two sons, at the age of 21, the progression became very active and I had lost almost all of the fat tissue from the rt. side of my face until I started the fat inject<i&I hope that you will be able to get more awareness about this condition out to the medical world, because many are still getting diagosed with this and there are no answers as to where or why this disease is occuring in just a few patients. Also maybe thi <j$<k%<l%<m% <n$<o% <p$<q%~ =#0@=$ Silvia Moler=$1550 Eastshore Drive=$Alameda=$ California =$USA=$94501=$ (510) 8141963=$s.moler@mindspring.com~ = #C@= $Female= $Right= $Romberg= $ =$=$ Skin Changes =$ =$=+,@+3@!=+@> D=D==%=$Right=$Lower=% =$ =$=% =$ =$=% =$ = $=!$Brown="$Brown =#$=$% =%$=&% ='#=(# =)$=*% =+$ =,$ =-$ =.$ =/#=0%=1% =2#=3# =4$ =5$Both~ =6*@=7%=8%=9%=:% =;&=<% ==$ =>$=?% =@$ =A$=B% =C$=D% =E$=F% =G$ =H$=I%C=J$:The right side of my tongue is smaller than the left side. =K$ =L$ =M&=N%=O%=P%=Q% =R$ =S$=T%=U%=V%=W% =X&=Y%3=Z$*I am adopted and don't know any relatives.=[% =\$=]% =^$=_% =`$ =a$=b%=c% =d$=e% =f$ =g& =h& =i& =j$=k%=l%=m% =n$=o%=p$General thanks=q%~ >#1@>$ Tom Sabel>$912 1st Ave. W #7>$Newton >$Iowa >$USA>$50208>$ 641 791 0581>$frank@iowatelecom.net~ > #G@ > $Male > $Left> $Romberg> $ >$>$ Skin Changes>$I first noticed the change in skin color. When i was diagnosed with atrophy in my right leg (Gastroc nemious) I realized I have had trouble with that leg all my life. >$>+=@+A@!>+@? D>D>>% >$Left>$Lower>% >$ >$>% >$ >$>%>$Right> $Lower>!$Brown>"$Brown >#$>$%]>%$TI have a bare spot on the atrophy side (left) slightly above and in front of my ear.>&% >'#>(# >)$>*% >+$ >,$ >-$ >.$ >/#>0%>1% >2#>3# >4$ >5$ >6*>7%>8%>9%>:%>;&Muscle spasms in the left side under my chin. I had the first one after an incident when I was 16 and I bumped my head on a car door on a very cold day. I hit the spot mentioned above where the hair is missing and suddenly my chin knotted up very painfull><%i>=$`What is trigeminal neuralgia. I have the muscle cramping/spasms in my chin and that's about all. >>$>?%0>@$'Teeth on the left side turn in slightly >A$>B%N>C$ELower lip has some atrophy and the top lip has a slight crease in it.>D% >E$>F% >G$ >H$>I% >J$>K$I have some recent atrophy in the pectoral muscle on the right side of my chest. When trying to investigate this disorder I was told that for some adults who may have been exposed to polio as a child they may have a reaction>L$to one ooof the meds that may cause leg problems. I was given Gamaglobulin when I was 4 yrs. for what may have been polio. That still wouldn't explain the facial atrophy? >M&>N%>O%>P%>Q%>R$Spinal tap, EMG, MRI, EEG, EKG,mega x-rays. I'll sign a release and you can have a look. Contact the Mayo Clinic and University of Iowa Hosptols and Clinics >S$>T%>U%>V%>W% >X&>Y% >Z$>[% >\$>]% >^$>_%(>`$Didn't see a doctor - see above >a$>b%>c4INJURY WITH BRUSING>d$I really feel that my facial problems were caused but the bump on the side of my head from the car door. There never was any lump or anything but I hit it vey hard then experience a severe spasm in my jaw. I was about 16 years old. The rest symptoms start>e% >f$ >g& >h&C>i&:I'm your guinea pig. If i can offer anything, let me know. >j$>k%>l%>m% >n$>o%>p$Thanks>q%~ ?#2@?$Susan L. Spiese?$620 S. Oak St.?$Manheim?$ Pennsylvania ?$USA?$17545?$ 717-665-7154?$cmusser@ptdprolog.net~ ? #G@? $Female? $Right? $Romberg ? $$?$ Skin Changes ?$ ?$?+2@+;@!?+"@@ D?D??%?$Right?$Lower?% ?$ ?$?% ?$ ?$?% ?$ ? $ ?!$Blue ?"$Blue ?#$?$% ?%$?&% ?'#?(# ?)$?*% ?+$ ?,$ ?-$ ?.$ ?/#?0%?1% ?2#?3# ?4$ ?5$ ?6*?7%?8%?9%?:% ?;&?<%P?=$GIt is on the right side & only occassional...a 2 on the 1-10 pain scale ?>$??% ?@$ ?A$?B% ?C$?D% ?E$?F% ?G$ ?H$?I% ?J$?K$I also had some small lumps along the line of my jaw at my ear. He said they were not associated with this condition, removed a few, sent them to pathology.A?L$8They were only enlarged lymph nodes & have not reoccured ?M&?N%?O%?P%?Q%?R$The doctor who diagnosed me (a plastic surgeon) took regular x-rays & some pictures. Took them to a medical convention & then came back with the diagnosis ?S$?T%?U%?V%?W% ?X&?Y% ?Z$?[% ?\$?]% ?^$?_%u?`$lSmashed a car window with my face in a car accident but this was 7 years after the symtoms had already onset ?a$?b%?c% ?d$?e% ?f$ ?g& ?h&?i&xThank you! This condition is so rare there is no money for research. Anything you can do to help us is much appreciated. ?j$?k%?l%?m% ?n$?o%?p$Thankyou?q%DIl 6  "  w   _"  - c G  @vT0@Av@Bv@Cv@Dv@Ev@Fv@Gv@Hv@Iv@$Jv@Kv$@Lv@$Mv@Nv$@Ov@Pv$@Qv@Rv@Sv@Tv@GUv@Vv@Wv@Xvw@Yv@Zv@[v@G\v@]v@G^v@_v@~ @#5@@$Christina Mangognia@$616 HAZELCREST DR.@$ PLAINFIELD@$Illinois @$USA@$60544@$ 815 577 7754(@$no email and phone doesn't work~ @ #2@@ $Female@ $Right@ $ Parry-Romberg@ $ @$@$ Skin Changes @$ @$@+@+"@!@+@A D@D@@%@$Right @$Both@% @$ @$@% @$ @$@% @$ @ $@!$Green@"$Green @#$@$% @%$@&% @'#@(# @)$@*% @+$ @,$ @-$ @.$ @/#@0%@1%~ @2#"@!@33@A3 D@2D@o@4$fA PULSATEING,THROBBING PAIN OCCURING ON A DAILY BASIS DOCTORS I HAVE SEEN ARE UNABLE TO DESCRIBE THEM. @5$~ @6*?@7%@8%@9%@:%$@;&NECK AND SHOULDERS TENSE UP@<%"@=$THE SIDE WITH THE ATROPHY @>$@?%B@@$9WHEN BABY THEETH WERE LOST, NO TRACE OF ADULT TEETH FOUND @A$@B% @C$@D% @E$@F% @G$ @H$@I% @J$ @K$ @L$ @M&@N%@O%@P%@Q% @R$ @S$@T%@U%@V%@W% @X&@Y% @Z$@[% @\$@]% @^$@_% @`$ @a$@b%@c% @d$@e% @f$ @g& @h& @i&+@j$"CMANGOGNIA@AOL.COM incorrect email@k%@l%@m% @n$@o%@p$General Thank you@q%~ A#7@A$ Mandy PerroA$2523 Rambling Rd.A$ViennaA$Virginia A$USAA$22181A$(703) 242-9327A$MandyPerro@aol.com~ A #D@A $FemaleA $RightA $ Parry-RombergA $ A$PFHAA$ Skin ChangesbA$Yleft side of face appeared not to "grow" & develope in the same manner as the right side. A$A+.@+A@!A+4@B DADAA% A$LeftA$UpperA% A$ A$A% A$ A$A% A$ A $A!$BrownA"$Brown A#$A$% A%$A&% A'#A(# A)$A*% A+$ A,$ A-$ A.$ A/#A0%A1%~ A2#2@!A33@B3 DA2DAA4$throbbing, "stress" type, felt like a huge rubber band around head. Sensitive to light & noise. Ususally would have to sleep them off in a quiet place. When I first started to have them, they occurred everyday at almost the same time. A5$Left~ A6*@A7%A8%A9%A:%A;&Then they suddenly stopped. I didn't have them for a long time ( only occassionally). Then they started to occur more frequently. I now get them 3-4 times a month. The pain is centered in my left temple & I become really disoriented. I also can't focus myA<%A=$I don't know. I haven't heard this diagnosis applied to me. I do get a prickly, tickling sensation on the left side occassionally. I also feel number on the left side than the right. A>$A?% A@$ AA$AB%)AC$ top left lip is slightly thinnerAD%`AE$WMy left eyebrow is lower than the right. I have also noticed the hair pattern thinning.AF%AG$This is where the majority of my recent changes have occurred. My vision in the left eye has changed quite drastically each year. I also failed the drivers vision test this year because when I looked at the field with only my left eye, it appeared blank.AH$With my right eye, or my right/left eye, I could see the letters in the field. I also get a sharp jabbing pain in my left eye. I have also lost control of my eye muscle in the left eye.AI% AJ$AK$When I look straight on, the left eye will frequently drift to the leftMy ENT thinks that the problems that I have with my left ear MAY be from the PRS. My eustachion tubes are poorly formed..AL$I have lost all hearing on my left side d/t a choslestoma in the left ear. However, I have just been diagnosed with another choslestoma in my right ear within the last month. AM&AN%AO%AP%AQ% AR$MRA AS$AT%AU%AV%AW%AX&What I found to be remarkable was that when I had orthoganathic surgery to pull both my upper & lower jaws out to correct malocclussions, the PRS seemed to exacerbate.AY% AZ$A[% A\$A]%#A^$Lupus Autoimmune DisordersA_%A`$when I was a toddler, I fell & hit my head where the left eyebrow forms, this is in the area of the PRS. However, it is only in the beginning area. My temple , cheek & eye orbits are also affected. Aa$Ab%Ac% Ad$Ae% Af$Ag&I do NOT have the mark of the sword. I do have a small indentions under my left eye. This is also the same place that a drain was inserted in order to save a plastic cheek implant, unsuccessfully. Ah& Ai& Aj$Ak%Al%Am% An$Ao%Ap$ThanksAq%~ B#=@B$Maecil Maris HiltonB$ 3929 TacomaB$IrvingB$Texas B$USAB$ 75072-7238B$1-972-252-1365B$maeceil@yahoo.com~ B #O@B $FemaleB $RightB $RombergB $B$ Parry-RombergB$ Skin Changes5B$,Two blue lines on the left side of forehead. B$B+@+A@!B+@@C DBDBB% B$Left B$BothB% B$ B$B% B$ B$B% B$ B $ B!$Blue B"$Blue B#$B$%hB%$_I have a bald spot on the left top of head,that runs down to forehead.Hair is dry in that area.B&% B'#B(# B)$B*% B+$ B,$ B-$ B.$ B/#B0%B1%~ B2#9@!B337@E3 DB2DBB4$The doctor described them as migraines. The only thing that helps are pain pills and to lay with my eyes closed. Sometimes they last for days. I have been to the point, I nearly go blind and, I am very nauseated. Doctors just wouldn't believe me,B5$Right~ B6*@B7%B8%B9%B:%B;&Some times my forehead and eye will swell, on the side I have Rombergs, during the headaches. And sometimes it will swell even if I don't have a headache.B<%_B=$VI have facila pain on the Rombergs side. All they say it's probably from the Rombergs. B>$B?% B@$ BA$BB%/BC$&My lip is smaller on my Rombergs side.BD%0BE$'I have no eyebrows on my Rombergs side.BF%;BG$2My eye is smaller and weaker on the Rombergs side. BH$BI% BJ$BK$Since 1980, when I was about 41, I really started having back problems. The cartilage is going away in the bottom 5 disks. This has created some problems with my back and legs. I really believe this has something to do with the Rombergs. BL$ BM&BN%BO%BP%BQ% BR$ BS$BT%BU%BV%BW% BX&BY% BZ$B[% B\$B]% B^$B_% B`$ Ba$Bb%Bc% Bd$Be% Bf$Bg&I have had several operations and most have not helped that much. The disease seems to counter act fats grafts and your right back where you started from. Any man made product, so far turns hard or desolves. The collegan injections really helped more thanBh&This is a follow-up on the survey questions I > answered, which were e-mailed. One of the worst > affects it has had on me has been the depression. It > really started in High School and has progress since. > I have always wondered if it affected oBi&MAY GOD HELP YOU WITH THIS STUDY. MY HUSBAND AND I HAVE BEEN TO SCOTLAND AND YOU HAVE A VERY BEAUTIFUL COUNTRY. WE HOPE TO VISIT AGAIN. Bj$Bk%Bl%Bm% Bn$Bo%,Bp$#Thank you and talk about depressionBq%~ C#>@C$ Lucian Smith C$ C$ C$ C$USA C$ C$C$cnjrsmith@yahoo.com~ C #A@ C $MaleC $RightC $RombergC $ C$C$ Skin ChangesC$Noticeable Asymmetry C$C+,@+,@!C+D DCDCC% C$Left C$BothC% C$ C$C% C$ C$C% C$ C $ C!$Blue C"$Blue C#$C$%'C%$Purplish/blue color under eye.C&% C'#C(# C)$C*% C+$ C,$ C-$ C.$ C/#C0%C1% C2#C3# C4$ C5$ C6*C7%C8%C9%C:% C;&C<% C=$ C>$C?% C@$ CA$CB%ACC$8Thin upper lip. Less facial hair on left side above lip.CD% CE$CF%CG$don't know if caused by Rombergs, but I am farsighted in left eye and near sighted in right eye. Left eye definately depressed in towards skull. Also cannot close left eyelid completely. Eye tends to be dry and red. Eyes are very sensitive to light. CH$CI% CJ$CK$Thin skin on left side of forhead and left cheek is very thin. Very pronounced depression of the left eye. Have a very pronounced coup de sabre CL$ CM&CN%CO%CP%CQ% CR$ CS$CT%CU%CV%CW%CX&Three surgeries. 1st. was a free flap placed in the left cheek area to fill in the depression. Flap taken from the left scapular area. Tissue was placed under the eye, but wasted away. Flap is still doing good, very, very slight drooping. Build-up of the CY% CZ$C[% C\$C]%@C^$7Great-Grandmother was blind. Father is blind in one eyeC_%C`$Several, but didn't go to the doctor. Hit in left side of face with fist. Fell straight down on head from about 5' onto concrete. age10? Thrown from a bike headfirst into the pavement. Age 12? Knocked out at least 4 times playing football. 13 - 17 Ca$Cb%Cc% Cd$Ce% Cf$yCg&pI live in the USA. Thanks for the reply and assurances. Let me know if you need any other information. Lucian Ch&Ci&If you do a follow up survey I would include some questions concerning the psychological effects this syndrome has on people. I do not give permission for my name to be given to anyone in relation to this study.Cj$Country of OriginCk%Cl%Cm%Cn$ Use of nameCo% Cp$Cq%~ D#@@D$Kimberley McMichaelD$20117 Ne 198th StD$ WoodinvilleD$ Washington D$USAD$98072D$ 425-844-2879'D$kimberleymcmichael@hotmail.com~ D #?@D $FemaleD $RightD $RombergD $ D$D$ Skin Changes D$ D$D+.@+?@!D+0@E DDDDD%D$Right D$BothD% D$ D$D% D$ D$D% D$ D $D!$HazelD"$Hazel D#$D$% D%$D&% D'#D(# D)$D*% D+$ D,$ D-$ D.$ D/#D0%D1% D2#D3# D4$ D5$ D6*D7%D8%D9%D:% D;&D<% D=$ D>$D?% D@$ DA$DB%PDC$Gminimal shrinkage on right side of upper lip and even less on lower lipDD% DE$DF% DG$ DH$DI% DJ$ DK$ DL$ DM&DN%DO%DP%DQ%DR$blood tests by rheumatologist- scleroderma tests, lupus tests, other autoimmune disease tests and blood tests- everything came back normal- both my MRI and blood tests DS$DT%DU%DV%DW%DX&I am scheduled to have reconstructive surgury next month. I was recommended to have a fat transplantation surgury or alloderm insertion. I chose alloderm insertion that will augment my lost tissue.DY% DZ$D[% D\$D]%DD^$;but I do not know my paternal grandfather and his ancestorsD_% D`$ Da$Db%Dc%PUBERTYDd$puberty( my disease began right around my first menustration) and then pregnancy( as this is when my disease came out of "remission"- possibly hormones could have played a partDe% Df$Dg&small bald patch on and slightly right to the middle of the top of my head, loss of eyelashes on the lower lid of my right eye, increased pigmentation under my right eye where the most tissue has been lost The disease began when I was 15 years old with fa Dh&EDi&<thank you so much, hope this will help someone in the future Dj$Dk%Dl%Dm% Dn$Do%*Dp$!Thank you comment about pregnancyDq%~ E#A@E$Meagan Elizabeth LeeE$1109 Hwy 20 EastE$ColvilleE$ Washington E$USAE$99114E$ 509-684-5988!E$momelee@theofficenet.com~ E #4@E $FemaleE $RightE $ Parry-RombergE $ E$E$ Skin Changes E$ E$E+?+@!E+?F DEDEE%E$Right E$BothE% E$Left E$BothE% E$Left E$BothE% E$Left E $BothE!$BrownE"$Brown E#$E$% E%$E&%~ E'#$@!E(#"@H( DE'DEE)$petit mal and grand mal, totally unaware. seizures have long duration, up to 40 minutes, following seizure, severe headaches, light sensitive. left side involvement, tremors & spasticity, yes doctors have described themE*% E+$Leg E,$Left E-$ E.$1 E/#E0%E1%~ E2#(@!E33&@F3 DE2DE>E4$5pressure, like a vise, pain from both light and soundE5$Right~ E6*@E7%E8%E9%E:% E;&E<%JE=$Aleft side of face,mostly chin area, nothing described from doctor E>$E?%lE@$csmaller left side jaw, teeth overlaped, had extensive dental work, braces, wear a retainer at night EA$EB%SEC$Jleft side of lips, especially lower lip smaller, pinched with a white spotED% EE$EF%aEG$Xpoor vision but unknown to be a connection, parents have very poor vision as do siblings EH$EI%SEJ$Jtongue is not symetrical, smaller on left side and have speech impairmentsEK$My entire left side is weaker and smaller. I have had a heel cord lengthening on my left leg (age 11) and I still have an uneven gait. My right brain function is impaired and I have memory problems.EL$I have clones on my left side especially my leg and balance problems. I have problems learning, more with maths and sciences, I have problems with fine motor skills. EM&EN%EO%EP%EQ% ER$ ES$ET%EU%EV%EW% EX&EY% EZ$E[% E\$E]% E^$E_% E`$ Ea$Eb%Ec% Ed$Ee% Ef$ Eg& Eh& Ei&Ej$How many seizures?Ek%El%Em% En$Eo%Ep$ Thank youEq%~ F#A@F$Kathleen GoodspeedF$2383 Ridge RoadF$ QueensburyF$New York F$USAF$12804F$(518) 656-3596F$Kgoodspeed@Juno.com~ F #@@F $FemaleF $RightF $ Parry-RombergF $ F$F$ Skin ChangesPF$GBaldness on the back to middle part of my head progressing to the front F$F+ @+8@!F+0@G DFDFF% F$Left F$BothF% F$ F$F% F$BothF$ChestF% F$ F $F!$BrownF"$Brown F#$F$% F%$F&% F'#F(# F)$F*% F+$ F,$ F-$ F.$ F/#F0%F1%~ F2#"@!F33?G3 DF2DFF4$At the time I did not realize that the migranes were related to PRS it was not until I was older - they are pretty rare but usually hit in the fall - My nuerologist suggested a anti depressant but I opted to go with out F5$Both~ F6*@F7%F8%F9%F:%F;&My body aches around the same period that I get these migranes - I usually vomit - it is difficult to lift my arms - my body is exhausted this usually hits in the fall and lasts for a month or two.F<%.F=$%Doctors have no clue - it is sporadic F>$F?%F@$Loss the bone in the upper left side - bridge loss of three theeth - also no wisdom teeth on left side and 2 teeth did not errupt FA$FB%#FC$upper left lip is missing.FD%*FE$!hair loss on spot in left eyebrowFF%VFG$MNot really my vision but my left eye became permantly dilated this past fall. FH$FI%FJ$Just a little atrophyFK$I have spots of atrophy on my back not on the front of my body. I seem to have alot of facial hair which no other family member of mine hasFL$I have the permantly dilated eye - the optomotrist diagnosed me with two diseases of the eye shich he said were related to PRS. FM&FN%FO%FP%FQ% FR$ FS$FT%FU%FV%FW% FX&FY% FZ$F[% F\$F]% F^$F_%rF`$iWhen I was little I fell on the ice - ice skating and went to the doctor as my mother feared a concussion Fa$Fb%Fc% PREGNANCYFd$|I mainly had baldness and the coup de sabre until my pregnancy - after that I lost tissue on face and began to lose lip etc.Fe% Ff$hFg&_I don't know how to do a picture on the computer but I could mail you one if your interested!!!Fh&I would just like to tell you that my doctor - Dr. John Seibert at NYU in NYC has performed many microvascular free flap tissue transplsnts on PRS and he has done studies really only related to reconstruction but he may be helpful to you if you are intere Fi& Fj$Fk%Fl%Fm% Fn$Fo%Fp$ Thank youFq%~ G#B@G$ Adele LiuG$509 Annadale RoadG$ Staten IslandG$New York G$USAG$10312G$(718) 356-6462G$adeleliu@hotmail.com~ G #D@G $FemaleG $RightG $RombergG $ G$PFHAG$ Skin Changes G$ G$G+@+C@!G+B@H DGDGG%G$Right G$BothG% G$ G$G% G$ G$G% G$ G $G!$BrownG"$Brown G#$G$% G%$G&% G'#G(# G)$G*% G+$ G,$ G-$ G.$ G/#G0%G1%~ G2#@@!G33>@H3 DG2DG3G4$*Blindling headaches that require bed rest. G5$Left~ G6*@G7%G8%G9%G:% G;&G<% G=$ G>$G?%_G@$VThe teeth on the affected side are loose and are anchored with splints. Also gum lose. GA$GB% GC$Atrophy upper right lipGD%"GE$Hair, bone and skin lose.GF%FGG$=My vision in my right eye is becoming more and more impaired. GH$GI% GJ$GK$I think the symtom I suffered the most is the grave indifference of the medical community as to the nature of this syndrome. Most doctors are apathetic to the needs of this small population.GL$And thus have suffered low self-esteem and depression. I will forward to you a recent survey I have conducted via the Rombergs Connection. I think you will find it helpful and very interesting GM&GN%GO%GP%GQ% GR$ GS$GT%GU%GV%GW% GX&GY% GZ$G[% G\$G]% G^$G_%!G`$A fall I had as a child. Ga$Gb%Gc4INJURY - STITCHESNGd$EI fell from a carriage and my baby teeth were sewn back into my gums.Ge% Gf$Gg&Please let us know the results of this survey and if you could possibly be a spokesperson on our behalf. Thank you for taking such a great interest in this syndrome. Gh& Gi& Gj$Gk%Gl%Gm%"Gn$Spokesperson, Survey infoGo% Gp$Gq%~ H#C@H$ Yvonne McLane H$3489 Gobblers Knob RoadH$WarriorH$Alabama H$USAH$35180H$ 205/648-3751H$ymclane@hotmail.com~ H #M@H $FemaleH $RightH $ Parry-RombergH $H(En coup de sabreH$ Skin ChangesH$Bald spot on scalp H$H+,@+A@!H+4@I DHDHH% H$Left H$BothH% H$ H$H% H$ H$H% H$ H $H!$BrownH"$Brown H#$H$%^H%$ULinear scar due to surgery along the entire left side of the head. Surgery at age 16.H&%~ H'#@@!H(#2@I( DH'DHH)$Treated during this period with Dilantin reaching a maximum of 800 ml per day. Had to be taken off Dilantin due to extreme weight loss. This was due to liver problem caused by the drug.H*% H+$ H,$ H-$SH.$JDuring period of seizures, took a minimum of 300 ml to a maximum of 800 ml~ H/#B@H0%H1%~ H2#6@!H33 @I3 DH2DHH4$Typical migraine H5$Left~ H6* @H7%H8%H9%H:% H;&H<% H=$Both H>$H?%\H@$SAll teeth on the right side have disintergrated. Teeth on left side are still good. HA$HB% HC$HD%2HE$)Loss of eyebrows especially on left side.HF%HG$Problems with left eye. Cannot stand any bright light. Have to wear sunglasses at all times while outdoors or have intense discomfort. HH$HI% HJ$HK$Started at 14 with loss of hair along left side. Operated on because doctors didn't know what else to do. Diagnosed as scleraderma. Continued down left forehead through eyebrow and eyelid. Stopped at approximately 19 years of ageHL$Had migraines from age 25 to 30. Seizures from age 32 to 37. Presently experiencing eye and tooth problems. Being evaluated at the University of Alabama at Birmingham. Have just had MRI of brain. Doctors are looking for development of plaque on brain. HM&HN%HO%HP%HQ% HR$ HS$HT%HU%HV%HW%qHX&hDilantin, phenobarbital, valium, for seizures. Massive injections of of B-12 for skin and scalp problem.HY%TRUE /NOjHZ$aPossibly my daughter who had optic neuroapathy of the left eye at age 12. Reason never diagnosed.H[% H\$H]%)H^$ My first cousin has sacroidosis.H_%]H`$TAge 2 - severe blow to back of head due to falling over backwards off of park bench. Ha$Hb%Hc% Hd$He% Hf$Hg&I feel this disease is one of the most misunderstood diseases. For years doctors not knowing about this disease have put me through unimaginable agony. This was due to their ignorance. I am very happy to know that so much more is known of this disease tod Hh& Hi& Hj$Hk%Hl%Hm% Hn$Ho%Hp$ Thank youHq%~ I#D@I$ Lory BriccoI$1828 Strong AvenueI$BeloitI$ Wisconsin I$USAI$53511I$ 608-365-7636I$lbricco@sdb.k12.wi.us~ I #E@I $FemaleI $RightI $ Parry-RombergI $I(En coup de sabreI$ Skin Changes I$ I$I+ @+>@!I+6@J DIDII%I$Right I$BothI% I$ I$I% I$ I$I% I$ I $ I!$Blue I"$Blue I#$I$% I%$I&%~ I'#>@!I(#6@L( DI'DII)$"Gustatory Seizures", complex partial - begin with a metalic, medicinal taste in my mouth and then in a seconds a numbing, tingling sensation travels from my tongue down the left side of my body. The seizure lasts from 3-10 minutes - exhausted afterwardsI*% I+$Both I,$Left I-$8I.$Tegretol~ I/#A@I0%I1%~ I2#*@!I33@L3 DI2DI@I4$7Extremely intense pain that begins anywhere on my head. I5$Both~ I6*@I7%I8%I9%I:%<I;(3Nausea and vomiting, sensitivity to light and soundI<% I=$l I>$I?% I@$ IA$IB%qIC$hRight, upper lip is atrophied and there's a small amount of discoloration in the right corne of my mouthID%hIE$_Right eyebrow has an "indention" in the center of the brow and the hair on that brow is thinnerIF%IG$Right pupil remains dilated at all times - I believe it's called an 'aides pupil' and recently the vision in my right eye has worsened significantly IH$II% IJ$ IK$ IL$ IM&IN%IO%IP%IQ%hIR$_Skin biopsy of scalp. Atrophy of insula and opercula.. MRI stable since 1989 (when she was 31)"IS$Plaquenil 200mg, bid, qodIT%IU%IV%IW%IX&Bald patch excisedIY% IZ$I[% I\$I]% I^$I_% I`$ Ia$Ib%Ic% Id$Ie% If$Ig&When I was 8 years old, I noticed my hair falling out on top of my head, just to the right of center. I developed a rather large bald spot, but was able to adequately conceal it with hair. Shortly after, I developed a dark discoloration of the skin on the Ih& Ii&+Ij$"Brain Lesion? Age Epilepsy stoppedIk%Il%Im% In$Io%Ip$ Thank youIq%~ J#D@J$ Kathryn LargeJ$ 554 W BoulderJ$Colorado SpringsJ$Colorado J$USAJ$80905J$ 719-444-8954&J$angelsoulkisses@earthlink.net~ J #D@J $FemaleJ $Right J $PFHAJ $ J$J$ Skin ChangesJ$zwasting away of the fatty tissue of the left side of the face, left shoulder area, left upper arm underneath and left hand J$J+@+@!J+?K DJDJJ% J$LeftJ$LowerJ% J$Both J$J% J$Left J$J% J$ J $J!$HazelJ"$Hazel J#$J$% J%$J&% J'#J(# J)$J*% J+$ J,$ J-$ J.$ J/#J0%J1% J2#J3# J4$ J5$ J6*J7%J8%J9%J:% J;&J<% J=$ J>$J?% J@$ JA$JB% JC$JD% JE$JF% JG$ JH$JI% JJ$ JK$ JL$ JM&JN%JO%JP%JQ% JR$ JS$JT%JU%JV%JW% JX&JY% JZ$J[% J\$J]% J^$J_% J`$ Ja$Jb%Jc% Jd$Je% Jf$Jg&God Bless you for doing this. I hope you will be able to find answers; thereby finding solutions and preventions for others. Just knowing there is a DOCTOR out there who cares enough to go to all this trouble is a great relief. May God give you the time t Jh& Ji& Jj$Jk%Jl%Jm% Jn$Jo%Jp$ Thank youJq%~ K#E@K$Cal. May!K$601 S. Vine P.O. Box 494K$ WaynetownK$Indiana K$USA K$K$47990K$cuscal101@hotmail.com~ K #D@ K $MaleK $RightK $RombergK $ K$PFHAK$ Skin Changes K$ K$K+"@+$@!K+?L DKDKK%K$RightK$LowerK% K$ K$K% K$ K$K% K$ K $K!$HazelK"$Hazel K#$K$% K%$K&% K'#K(# K)$K*% K+$ K,$ K-$ K.$ K/#K0%K1% K2#K3# K4$ K5$ K6*K7%K8%K9%K:% K;&K<% K=$ K>$K?% K@$ KA$KB% KC$KD% KE$KF% KG$ KH$KI% KJ$ KK$ KL$ KM&KN%KO%KP%KQ% KR$ KS$KT%KU%KV%KW% KX&KY% KZ$K[% K\$K]%K^$ PsoriasisK_% K`$ Ka$Kb%Kc% Kd$Ke% Kf$Kg&Thank you for doing this. Finding a doctor who knows anything about this disease can be difficult and frustrating. Hopefully This research will help all of us. Cal. Kh& Ki& Kj$Kk%Kl%Km% Kn$Ko%Kp$ Thank youKq%~ L#E@L$Mary Diane SprayberryL$6623 Jodie Dr.L$ StanfieldL$North Carolina L$USA L$L$ 704-8880456L$mds6623@aol.com~ L #J@L $FemaleL $RightL $ Parry-RombergL $ L$PFHAL$ Eye problems L$ L$L+5@+J@!L+?@M DLDLL%L$Right L$BothL%L$Right L$L% L$ L$L% L$ L $L!$BrownL"$OtherL#$Changes colourL$% L%$L&%~ L'#&@!L(#$N( DL'DLL)$ grand mallL*% L+$ L,$ L-$8 L.$~ L/#1@L0%L1%~ L2#H@!L33<@M3 DL2DLPL4$Ga pain on my forhead and eyes sometime going back of my head to my neckL5$Right~ L6*?L7%L8%L9%L:%L;(like a numbnessL<%L=$right L>$L?%#L@$all my teeth top an bottom LA$LB% LC$LD%)LE$ I have ascar in my right eyebrowLF% LG$ LH$LI% LJ$6LK$-my skull is afected on right side doe to neck LL$ LM&LN%LO%LP%LQ% LR$ LS$LT%LU%LV%LW%<LX&3I have just lived with it noone knows much about itLY% LZ$L[%L\$cousins mothersideL]% L^$L_% L`$ La$Lb%Lc%STRESSLd$stressLe% Lf$ Lg& Lh&pLi&gI e-mailed you earlier to see if tou got this .please let me know if you get this if you can thankyouas Lj$Lk%Ll%Lm%Ln$Earlier email receivedLo% Lp$Lq%~ M#F@M$ Marie WingetM$424 17th AvenueM$FultonM$Illinois M$USAM$61252M$ 815 589 3070M$rexwin@essex1.com~ M #K@M $FemaleM $RightM $RombergM $ M$PFHAM$ Skin Changes M$ M$M+?+E@!M+D@N DMDMM% M$Left M$BothM% M$ M$M% M$ M$M% M$ M $ M!$Blue M"$Blue M#$M$%7M%$.Grey Spot left side of forehead in high schoolM&% M'#M(# M)$M*% M+$ M,$ M-$ M.$ M/#M0%M1%~ M2#$@!M33"@N3 DM2DM|M4$sFrequent headaches, some severe. Don't know if this qualifies as migraine. NO sickness or light sensitivity with it M5$Both~ M6*@M7%M8%M9%M:%@M;&7Dull Headache - often severe. Occasional Blurred visionM<%M=$Dull minor ache M>$M?%;M@$2Jaw out of line - had to straighten top and bottom MA$MB% MC$MD%ME$Left eyebrow droopsMF%@MG$7Unknown if this is an effect. Left eye worse than right MH$MI% MJ$ MK$ ML$ MM&MN%MO%MP%MQ% MR$ MS$MT%MU%MV%MW%MX& See articleMY% MZ$M[% M\$M]% M^$M_% M`$ Ma$Mb%Mc% Md$Me% Mf$ Mg& Mh& Mi& Mj$Mk%Ml%Mm% Mn$Mo%Mp$ThankyouMq%~ N#G@N$Jennifer L ReeseN$10035 Sagewood Dr N$RenoN$Nevada N$USAN$89506N$ 775-971-0767&N$brennmom@hotmail.com is wrong~ N #9@N $FemaleN $RightN $RombergN $ N$N$ Skin ChangesN$alopecia N$N+@+$@!N+@O DNDNN%N$Right N$BothN% N$ N$N% N$ N$N% N$ N $N!$GreenN"$Green N#$N$% N%$N&%~ N'#1@!N(#&@W( DN'DNxN)$oJacksonian Seizures Numbness completely covering the left side of my body, usually followed by severe headachesN*% N+$Both N,$Left N-$6N.$ ! Tegretol N/#N0%N1%~ N2#.@!N33"@P3 DN2DNIN4$@extreme pain, aura, sensitivity to light ,noise, and temperature N5$Both~ N6*@N7%N8%N94N:% N;&N<%\N=$SUsually the right side of my head and face. The doctor call it Trigeminal Neuralgia N>$N?%1N@$(Weekness and loss of teeth on right side NA$NB%"NC$right upper lip atrophiedND%!NE$atrophy and loss of hairNF%NG$blurred in right eye NH$NI%NJ$atrophy NK$ NL$ NM&NN%NO%NP%NQ% NR$ NS$NT%NU%NV%NW% NX&NY% NZ$N[% N\$N]% N^$N_% N`$ Na$Nb%Nc% Nd$Ne% Nf$ Ng& Nh& Ni&)Nj$ brennmom@hotmail.com wrong emailNk%Nl%Nm% Nn$No% Np$Nq%~ O#H@O$Patrick Ward HindmanO$1784 Becker DriveO$ Fort Dodge O$Iowa O$USAO$50501O$(515) 576-8486!O$patbette@frontiernet.net~ O #J@ O $MaleO $RightO $RombergO $ O$O$ Skin Changes4O$+Indentation on right cheek below right eye. O$O+>@+>@!O+P DODOO%O$Right O$BothO% O$ O$O% O$ O$O% O$ O $ O!$Blue O"$BlueO#$My left eye is remarkable in that the top half of the iris is brown and the bottom half is the same shade of blue marked by the right eye.O$%O%$My hair has gone from auburn to blondish as I have aged. I have one circular area of hair about 5 centimeters in diameter near the left base of my skull that is very blondish.O&% O'#O(# O)$O*% O+$ O,$ O-$ O.$ O/#O0%O1% O2#O3# O4$ O5$ O6*O7%O8%O9%O:% O;&O<%O=$I have a "sensation" not to be characterized as pain. This feeling is difficult to describe but my best effort would be the say it is as if a spider or small insect were crawling on the right side of my face on the area below my right sideburn. O>$O?% O@$ OA$OB%/OC$&My right upper lip has lost some mass.OD% OE$OF% OG$ OH$OI%@OJ$7Slight decrease in mass on the right side of my tongue.OK$I have the 'en coupe de sabre on the right side of my forehead. The right side of my head and neck are marked by a generalized decrease in mass with the most apparent being the 'dent' in my right check where most of the sub-q. muscle and fat are missing. OL$ OM&ON%OO%OP%OQ% OR$ OS$OT%OU%OV%OW% OX&OY% OZ$O[% O\$O]% O^$O_%O`$Age 19. Ejected during auto accident. Unconcious for 5 days. Result was diplopia ( corrected somewhat by glasses) and diminished coordination of left upper limb. Oa$Ob%Oc% Od$Oe% Of$Og&I have many allergies as well as arthritis. I suspect facial hemiatrophy is a genetic problem. My reading on the subject is somewhat limited but I have read reports Rombergs being discovered in Egyptian tombs. I question this but do believe it could have  Oh& Oi&:Oj$1Anything on CT scan. General thank you email sentOk%Ol%Om% On$Oo% Op$Oq%~ P#J@P$Andrea BodenbergP$ 55 Fidler Rd.P$ GettysburgP$ Pennsylvania P$USAP$17325P$ 717-334-6098P$crewchik21@irow.com~ P #5@P $FemaleP $RightP $ Parry-RombergP $ P$PFHAP$ Skin Changes P$ P$P+@+@!P+@Q DPDPP% P$Left P$BothP% P$ P$P% P$ P$P% P$ P $ P!$Blue P"$Blue P#$P$%WP%$NBut, I don't have hair in the portion where the disease has originated itself.P&% P'#P(# P)$P*% P+$ P,$ P-$ P.$ P/#P0%P1%~ P2#*@!P33&@R3 DP2DPP4$Migraines and regular headaches. They come and go like all other headaches. Sometimes I take Tylenol or migraine headache drugs. No doctor has diagnosed them. P5$Left~ P6*@P7%P8%P9%P:% P;&P<%aP=$XOn the left side mostly, near the eye socket. Sometimes down the left side of the cheek. P>$P?%~P@$uJaw was too small; buck-teeth, had to have braces for about eight years. Sometimes jaw gets locked into open position PA$PB%LPC$CLeft side of upper lip is raised, like an Elvis Presley impression.PD%PPE$GBrow does not start until after line down left side of face. Near nose.PF%OPG$FAfter surgery, lower lid pulled down which affects wearing of contacts PH$PI%(PJ$Left side of tongue is smaller.PK$Left side nostril was smaller than right side. Sometimes had trouble breathing. Jaw on left side was too small for all of my teeth, therefore a lot of teeth, including all my wisdom teeth, had to be pulledKPL$BI still don't have enough room in my mouth for my remaining teeth. PM&PN%PO%PP%PQ% PR$ PS$PT%PU%PV%PW%PX&Have had two reconstructive surgeries. One at sixteen which led me to the second before my spring semester of my freshman year of college. I was diagnosed and treated by Dr. Linton A. Whitaker of the Children's Hospital of Philadelphia. Not only did he trPY% PZ$P[% P\$P]% P^$P_% P`$ Pa$Pb%Pc% Pd$Pe% Pf$ Pg& Ph& Pi& Pj$Pk%Pl%Pm% Pn$Po%Pp$ Thank youPq%~ Q#L@Q$Missy ThompsonQ$1905 NICKLETOWN RDQ$ GREENWOODQ$Arkansas Q$USAQ$72936 Q$Q$ MTTEE@AOL.COM~ Q #A@Q $FemaleQ $RightQ $ Parry-RombergQ $ Q$Q$ Skin ChangesQ$}AN INDENTATION LIKE A WRINKLE DEVELOPED DOWN THE CENTER OF MY FOREHEAD THEN THE RIGHT SIDE OF MY FOREHEAD BECAME MUCH THINNER Q$Q+*@+?@!Q+2@R DQDQQ%Q$Right Q$BothQ% Q$ Q$Q% Q$ Q$Q% Q$ Q $ Q!$Blue Q"$Blue Q#$Q$%-Q%$$NOT DIFFERENT COLOR BUT MUCH THINNERQ&% Q'#Q(# Q)$Q*% Q+$ Q,$ Q-$ Q.$ Q/#Q0%Q1% Q2#Q3#CQ4$:PAIN MAINLY BEHIND MY EYE AND FOREHEAD ON THE ATROPHY SIDEQ5$Right~ Q6*@Q7%Q8%Q94Q:% Q;&Q<% Q=$ Q>$Q?%SQ@$JMAYBE- ONE OF THE MOLARS ON THE RIGHT SIDE SEEMS TO BE DYING FOR NO REASON QA$QB%"QC$THINNER ON THE RIGHT SIDEQD%,QE$#HAIR IS THINNER ON MY RIGHT EYEBROWQF% QG$ QH$QI% QJ$QK$MY NOSE IS SMALLER ON THE RIGHT SIDE AND THE CARTILAGE IS DISAPPEARING. ALSO MY CHIN HAS A LINE DOWN THE CENTER AND IS SMALLER ON THE RIGHT SIDE QL$ QM&QN%QO%QP%QQ% QR$ QS$QT%QU%QV%QW% QX&QY% QZ$Q[% Q\$Q]% Q^$Q_% Q`$ Qa$Qb%Qc%SURGERYpQd$gNOT INITIALLY BUT MANY YEARS LATER IT SEEMS TO BE PROGRESSING AGAIN. THIS OCCURRED AFTER I HAD SURGERY.Qe% Qf$ Qg& Qh& Qi&#Qj$Weakness during headaches?Qk%Ql%Qm% Qn$Qo%Qp$ Thank youQq%~ R#M@R$ Jason SubtR$4907 southcrest drR$austinR$Texas R$USAR$78746R$ 512 3273127R$jasonsubt@yahoo.com~ R #=@ R $MaleR $RightR $RombergR $ R$R$ Skin Changes R$ R$R+"@+$@!R+?S DRDRR% R$LeftR$LowerR% R$ R$R% R$ R$R% R$ R $ R!$Blue R"$Blue R#$R$% R%$R&% R'#R(# R)$R*% R+$ R,$ R-$ R.$ R/#R0%R1%~ R2#$@!R33?S3 DR2DR R4$ R5$Both~ R6*@R7%R8%R9%R:%R;&I don't get many headaches these days that seem any worse than the people around me, but there was a time around ages ten to maybe sixteen that I got these terrible headaches. They would come on rapidly and the pain was like nothing I could even compare. R<% R=$ R>$R?%R@$I notice a slite upward slant to the left of teeth in general, also two teeth never came in after baby teeth had fallen out. very odd it was the teeth to the left and right of the two front top teeth RA$RB%xRC$oI have what appears to look alot like a hair lip. It is on left upper. The area has slite discoloration as wellRD% RE$RF% RG$ RH$RI% RJ$RK$Some of the other visual symptoms are as follows; missing eye lashes bottom of left eye, drupping left eye, Compromised facial symmetry in area below left eyeRL$along with some discoloration of skin in this area and finally nose that pulls a little to the left. Sounds much worse than it looks RM&RN%RO%RP%RQ% RR$ RS$RT%RU%RV%RW% RX&RY% RZ$R[% R\$R]% R^$R_% R`$ Ra$Rb%Rc% Rd$Re% Rf$ Rg& Rh& Ri& Rj$Rk%Rl%Rm% Rn$Ro% Rp$Rq%~ S#P@S$ Shawn Fox S$7484 Holworthy Way #137S$ SacramentoS$ California S$USAS$95842S$1-916-349-1046S$dsfoxden@home.com~ S #6@S $FemaleS $RightS $ Parry-Romberg S $$S$ Skin Changes+S$"The first sign was facial atrophy. S$S+&@+2@!S+@T DSDSS% S$LeftS$LowerS% S$ S$S% S$ S$S% S$ S $S!$BrownS"$Brown S#$S$%NS%$EI have a small patch of grey hair back of my head. It may be genetic.S&% S'#S(# S)$S*% S+$ S,$ S-$ S.$ S/#S0%S1%~ S2#(@!S33?U3 DS2DSS4$At first they weren't so bad, then they started to get worse. They went from a couple a year, to a couple a month. I now have one maybe once or twice a year. S5$Both~ S6*@S7%S8%S9%S:%`S;&WJust basically the sensitivity to bright light, and that dull aching pain and sickness.S<%bS=$YI used to have pain on my left side, but we believe it was from the loss of fatty tissue. S>$S?%wS@$nmy maxilla is tilted up on the left side. It takes more thought to make my left molars to touch than my right. SA$SB%[SC$RThe left side of my lip is now thinner than the other side. Just on the upper lip.SD% SE$SF%wSG$nI have an asthigmatism in my left eye. I don't know if that has anything to do with it. My right eye does not. SH$SI% SJ$SK$I have had a loss of hearing in my left ear and my whole ear sticks out farther than my right. When I was younger, I had a perferrated ear drum (left ear) and when I was 11 I had a surgery to correct it.GSL$>About 6 months later, I started experiencing the hearing loss. SM&SN%SO%SP%SQ% SR$LP SS$ST%SU%SV%SW% SX&SY% SZ$S[% S\$S]% S^$S_% S`$ Sa$Sb%Sc%SURGERY-Sd$$My ear surgery as I mentioned above.Se%&Sf$No But I was checked for it. Sg& Sh& Si& Sj$Sk%Sl%Sm% Sn$So% Sp$Sq%~ T#@P@T$Amber Lekay CovinT$170 Laurel Leaf LaneT$CanyonT$Texas T$USAT$79015T$ 806 655-8555T$covin8@msn.com~ T #@T $FemaleT $RightT $RombergT $ T$T$ Skin Changes}T$tAmber's eyelashes on her bottom left eyelid were no longer there and there was a dark appearance under the same eye. T$T+p@+@!T+?U DTDTT% T$LeftT$LowerT% T$ T$T% T$ T$T% T$ T $ T!$Blue T"$Blue T#$T$% T%$T&% T'#T(# T)$T*% T+$ T,$ T-$ T.$ T/#T0%T1% T2#T3# T4$ T5$ T6*T7%T8%T9%T:% T;&T<% T=$ T>$T?%nT@$eAmber has developed a gap in between two of her front teeth that wasn't there when the teeth came in. TA$TB%TC${The upper left corner has become noticably smaller than the right side of the lip, thus causing the smile to appear crookedTD% TE$TF% TG$ TH$TI% TJ$TK$Those are the main sympoms. Amber's health has been and is still great. The asymmetrical appearance that is developing in her face is her partent's main concern. TL$ TM&TN%TO%TP%TQ% TR$ TS$TT%TU%TV%TW% TX&TY% TZ$T[% T\$T]% T^$T_% T`$ Ta$Tb%Tc%Td$This may be totally unrelated, but the summer befor we notice the eyelash loss, I noticed the darkened appearance under both eyes. One eye cleareed and the othe one didn'tTe%Tf$Amber has never had a test for lyme disease because she has never had any of the symptoms but I have wondered if that could be possible.Tg&My name is Shonna Covin and I am Amber's mother. We have become very frustrated with the lack of information that is available. It breaks my heart to see Amber's beautiful face to now only be halfway developing. I began a file on Amber consisting with a p Th&[Ti&RI would like to know who and how much research is going on regarding this syndrome Tj$Tk%Tl%Tm% Tn$To% Tp$Tq%~ U#P@U$ Karen Feutz U$ U$MesaU$Arizona U$USA U$ U$U$kitt1224@aol.com~ U #J@U $FemaleU $RightU $RombergU $ U$U$ Skin ChangesU$Left facial atrophy U$U+!@+,@!U+@V DUDUU% U$Left U$BothU% U$ U$U% U$Left U$U% U$Left U $U!$HazelU"$Hazel<U#$3Sometimes the left eye appears more green than blueU$%gU%$^Have a patch of gray hair in the front of my head, starting to the left of center on the scalpU&% U'#U(# U)$U*% U+$ U,$ U-$ U.$ U/#U0%U1%~ U2#2@!U33#@V3 DU2DUU4$Had bad headaches in late teens, but not migraines. Started having right-side migraines in my late thirties which stopped after several years. Now, I have an almost constant headache on left side. U5$Left~ U6*?U7%U8%U9%U:% U;&U<%KU=$BOn a regular basis it just hurts on left side; a painful neuralgia U>$U?%U@$I have had dentures since I was in my mid 20's but don't know if it's from the Rombergs. We don't have very good teeth in my family UA$UB%OUC$FLeft side top lip much thinner. Mouth is also pulled to the left side.UD% UE$UF%UG$Besides the dry eye on left side, I have pain around the, especially the top of the left eye. It seems to occur when I'm also having the facial neuralgia. UH$UI%8UJ$/Minor, tongue is slightly smaller on left side. UK$ UL$ UM&UN%UO%UP%UQ% UR$ US$UT%UU%UV%UW% UX&UY% UZ$U[% U\$U]% U^$U_%,U`$#However it was after the Romberg's. Ua$Ub%Uc% Ud$Ue% Uf$ Ug& Uh&Ui&I do not want to provide my address or phone number. This is private info. But, I am appreciative of your effort. Doctor's I've encountered don't know anything about this nor do they care. Uj$Uk%Ul%Um% Un$Uo% Up$Uq%~ V#P@V$ Patty BurkettV$ 215 princetonV$BentonV$Arkansas V$USAV$72015V$ 5017788166*V$!crazymomma8166@aol is wrong email~ V #E@V $FemaleV $RightV $RombergV $ V$PFHAV$ Skin Changes1V$(discoloration,blind rt. eye,sunken areas V$V+$@+6@!V+(@W DVDVV%V$Right V$BothV% V$ V$V% V$ V$V%V$RightV $LowerV!$GreenV"$Green V#$V$% V%$V&% V'#V(# V)$V*% V+$ V,$ V-$ V.$ V/#V0%V1%~ V2#4@!V33$@W3 DV2DV"V4$thudding pain,sharp pain,V5$Right V6*V7%V8%V9%V:% V;&V<%eV=$\I have not told the doctors about it. none of the doctors here know what or how to treat me. V>$V?%CV@$:they have started to break,seems like I have lost calcium. VA$VB% VC$VD%5VE$,changed with the sunken areas of my foreheadVF%5VG$,blind in my right eye,pupil dilitated,sunken VH$VI% VJ$XVK$OI had a soft sppot on my scalp very sunken it was at least 3 in.long 2in. wide. VL$ VM&VN%VO%VP%VQ% VR$ VS$VT%VU%VV%VW%VX&collegen injectionsVY% VZ$V[% V\$V]% V^$V_% V`$ Va$Vb%Vc4INJURY WITH BRUSINGDVd$;I fell off the dryer when I was 9 hitting my head very hardVe% Vf$Vg&I have had plastic surgery 2 years ago. I improved in looks as not to be so noticable. It was very tramitizing.I became very depressed, it is a continuing process that I can't afford. Im not sure were to turn next. Vh& Vi& Vj$Vk%Vl%Vm% Vn$Vo% Vp$Vq%~ W#@Q@W$ Robert Clarke"W$1602 N Rhodes Street, A-1W$ ArlingtonW$Virginia W$USAW$22209W$ 703-351-5009W$wtrwlkr@hotmail.com~ W #=@ W $MaleW $RightW $ Parry-RombergW (En coup de sabreW)linear sclerodermaW$ Skin ChangesW$Just to mention, the dark line that I now have vertically on my forehead, I would swear looks just like the one that used to run horizontally on the back|W$sof my calf muscle which now that I think about seemed to disappear at the same time a line appeared on my forehead.W+&@+(@!W+?X DWDWW%W$Right W$BothW% W$ W$W% W$ W$W% W$ W $W!$BrownW"$Brown W#$W$%#W%$but I do have bald patchesW&%~ W'#&@!W(#f( DW'DWW)$petit mal, I believe is what they said. I had and still do although it has calmed down com=nsiderably, twitches in my faces and neck on the righth side.W*% W+$FaceW,$Right W-$ W.$ W/#W0%W1%~ W2#&@!W33X3 DW2DW W4$W5$Right~ W6*@W7%W8%W9%W:%5W;&,pain and tingling down the groove in my headW<%?W=$6right side over cheak and middle to right side of head W>$W?%-W@$$right jaw slightly smaller, grinding WA$WB%WC$right side thinnerWD% WE$WF% WG$ WH$WI%HWJ$?I believe the doctor said that it was smaller on the right side WK$ WL$ WM&WN%WO%WP%WQ% WR$ WS$WT%WU%WV%WW%WX& klonopin,WY% WZ$W[%9W\$0brother had it when much younger, around 6yrs???W]% W^$W_%eW`$\yes, when I was younger in England, I was hit in my head by a car as I ran across the street Wa$Wb%Wc% Wd$We% Wf$ Wg& Wh& Wi& Wj$Wk%Wl%Wm% Wn$Wo% Wp$Wq%~ X#Q@X$ Susan Niles X$X$MiamiX$Florida X$USA X$ X$X$sfniles@bellsouth.net~ X #J@X $FemaleX $RightX $ Parry-RombergX $ X$X$ Skin Changes X$ X$X+@+7@!X+4@Y DXDXX% X$LeftX$UpperX% X$ X$X% X$ X$X% X$ X $X!$OtherX"$BrownX#$June, 1997, I had Strabismis surgery that caused dilation of the pupil (7 m.m.) and turned a green eye color from lack of oxygen.X$% X%$X&% X'#X(# X)$X*% X+$ X,$ X-$ X.$ X/#X0%X1%~ X2#2@!X33.@]3 DX2DX X4$ X5$Both~ X6*@X7%X8%X9%X:%X;& I have a history of premenstrual headaches every month characterized by left orbital pain that last for several days. I have a constant background of nausea. On September 30, 1996, age 49, I developed severe holocranial bifrontal pressure-like headachesX<%(X=$No, I have occipital neuralgia. X>$X?%X@$In 1984, I developed Temporomandibular Joint problems. and an arthogram revealed a meniscus tear. In 1997, an MRI revealed a missing left masseter muscle. XA$XB% XC$XD%XE$At the age of 3, a white spot developed on the left eyebrow and eventually 1/2 of the brow disappeared on the "en coup de sabre" path on the left.XF%XG$At the age of 23, I lost the sight in the left eye within 4 days. It is a neuro-neuritis. Left vision is to count fingers in the temporal periphery only. A mass exists behind the eye with exotropia, exophthalmus decreased eye mobility.XH$I can not adduct or elevate or depress the left eye. The pupil is larger, more sluggish and there is left afferent pupillary defect neuropathy. There is some evidence of aberrant regeneration.XI% XJ$XK$Skull defect over the vertex and parietal region on the left side of the head from the eye and is considered "en coupe de sabre." XL$ XM&XN%XO%XP%XQ%3XR$*Spinal tap to rule out multiple sclerosis. XS$XT%XU%XV%XW%hXX&_Steroid injections (set of 3) into left eye in hopes of restoring left eye vision in 1971-1972.XY% XZ$X[% X\$X]%X^$Maybe, the history of my father's migraines and his death after a cerebral hemorrhage in 1964, at the age of 45. My MRI reveal no problems for me.X_%X`$A car accident in 1987. I lost vision in my right eye after hitting my head on the window. Vision returned after about 3 minutes. Xa$Xb%Xc%LXd$CThe doctors can only guess that maybe a bout of pneumonia at age 2.Xe% Xf$Xg&I just hope that more attention can be given to this rare disease. I feel I have suffered psychologically in the past for feeling like a freak, even with a mild case compared to others that I've seen pictures of on the internet. Thank you for beginning th Xh&Xi&None at this time. Xj$Xk%Xl%Xm% Xn$Xo% Xp$Xq%~ Y#@R@Y$Sally VanRaemdonckY$2142 FleetwoodY$Grosse Pointe WoodsY$Michigan Y$USAY$48236Y$ 313-882-5861Y$vanraem@aol.com~ Y #H@Y $FemaleY $Right Y $PFHAY $Y$ Parry-RombergY$ Eye problems Y$ Y$Y+$@+:@!Y+0@Z DYDYY% Y$LeftY$UpperY% Y$ Y$Y% Y$ Y$Y% Y$ Y $Y!$HazelY"$Hazel Y#$Y$%HY%$?I dye my hair now, but it seemed the atrophy side was more grayY&% Y'#Y(# Y)$Y*% Y+$ Y,$ Y-$ Y.$ Y/#Y0%Y1% Y2#Y3# Y4$ Y5$ Y6*Y7%Y8%Y9%Y:% Y;&Y<% Y=$ Y>$Y?%^Y@$UThe tooth on the left side that is right in the path of the atrophy never fully grew. YA$YB% YC$YD%=YE$4Not normally shaped and there is definite hair loss.YF%YG$Very low pressure in the left eye (between 3 and 5....should normally be in the teens.) Poor vision in the left eye....legally blind in that eye, but I do have some vision.iYH$`Left pupil does not react to light/dark normally. My eye doctor would have all the medical info.YI% YJ$YK$Cranial atrophy on left side. Hair loss on left side that I can conceal. I've been told that the atrophy is much more obvious in a picture or in a mirror, as in a reflection, than it is to look at directly.YL$I do not understand why but know that it must be true, because now that my daughter is showing symptoms, I can see it much more clearly when I stand behind her in a mirror. YM&YN%YO%YP%YQ%lYR$cThe CT scan was done over 20 years ago (when it was a very new test). I've had no other tests done. YS$YT%YU%YV%YW% YX&YY%YZ$vMy 10 year old daughter is displaying symtoms of hemifacial atrophy and the assymetry has been confirmed by our doctorY[% Y\$Y]% Y^$Y_%Y`$1). Age 6 (approx), I was hit in the forehead with a flying baseball bat. The swelling was huge 2). Age 7, I hit my head on a metal water tank and again on the cement base of the tank with great force. I had to get stitches and still have a bump. Ya$Yb%Yc% Yd$Ye% Yf$Yg&My initial problems were vision problems. Any doctor that I would see would comment on the uneveness of my pupils. The eye doctor thought I had a lazy eye. The atrophy itself was not noticible until I got into my 20's. I was so fortunate to just happen to Yh& Yi& Yj$Yk%Yl%Ym% Yn$Yo% Yp$Yq%~ Z#R@Z$ Corey LemoineZ$ 6 Mead aveZ$ Mount SinaiZ$New York Z$USAZ$11766Z$ 631 476 5817 Z$loumer@worldnet.att.net~ Z #$@ Z $MaleZ $RightZ (En coup de sabreZ $Z$MorphoeaZ$ Skin Changes Z$ Z$Z+@+@!Z+[ DZDZZ% Z$Left Z$BothZ% Z$Left Z$Z% Z$Both Z$Z% Z$ Z $Z!$BrownZ"$Brown Z#$Z$% Z%$Z&% Z'#Z(# Z)$Z*% Z+$ Z,$ Z-$ Z.$ Z/#Z0%Z1% Z2#Z3# Z4$ Z5$ Z6*Z7%Z8%Z9%Z:% Z;&Z<% Z=$ Z>$Z?% Z@$ ZA$ZB% ZC$ZD% ZE$ZF% ZG$ ZH$ZI% ZJ$JZK$Atightening feeling in fingers of left hand- like a trigger finger ZL$ ZM&ZN%ZO%ZP%ZQ%ZR$ skin biopsy ZS$ZT%ZU%ZV%ZW%@ZX&7methotrexate injections weekly topical steroidal creamsZY% ZZ$Z[% Z\$Z]% Z^$Z_% Z`$ Za$Zb%Zc%Zd$ lymes diseaseZe%SZf$Jtreated with amoxacillin times 3 weeks for positive titre and western bloc Zg& Zh& Zi& Zj$Zk%Zl%Zm% Zn$Zo% Zp$Zq%~ [#R@[$Diane [$ [$ [$Ohio [$USA [$ [$[$Deanasan@aol.com~ [ #C@[ $Female [ $Left[ $Romberg[ $ [$[$ Skin Changes[$On the right side of my face I started noticing wrinkle type lines above my lip and my chin, and thinning of the right side of my upper lip. [$[+1@+9@![+ @\ D[D[[%[$Right[$Lower[% [$ [$[% [$ [$[% [$ [ $[!$Hazel["$Hazel [#$[$% [%$[&% ['#[(# [)$[*% [+$ [,$ [-$ [.$ [/#[0%[1% [2#[3# [4$ [5$ [6*[7%[8%[9%[:% [;&[<% [=$ [>$[?% [@$ [A$[B%;[C$2The right upper lip side is thinner than the other[D% [E$[F%[G$I never used to think so, but I think Rombergs' the reason my left eye is severly farsighted 20/100 and I have a lazy left eye. My right eye is 20/20 and I was told that I was supposed to be right handed. [H$[I% [J$[K$I may have other problems related to Rombergs but I'm not sure. I am taking this test in hope that I can view other results from people with the same degree of damage to see if my Rombergs is responsible for other problems. [L$ [M&[N%[O%[P%[Q% [R$ [S$[T%[U%[V%[W% [X&[Y% [Z$[[% [\$[]% [^$[_%H[`$?I was in an accident at age 25 and had post concussion syndrome [a$[b%[c% [d$[e% [f$ [g& [h& [i& [j$[k%[l%[m% [n$[o% [p$[q%~ \#S@\$ Jodi Quelle \$12134 West 99th Terrace\$Lenexa\$Kansas \$USA\$66215\$ 913-492-0571 \$fourquelles@hotmail.com~ \ #?@\ $Female\ $Right\ $ Parry-Romberg\ $ \$PFHA\$ Skin Changes\$Tightness, aching, twitching, tingly sensations on the left side of my face with my left cheek progressively sinking in and my left nostril shrinking. \$\+;@+?@!\+@] D\D\\% \$Left\$Lower\% \$ \$\% \$ \$\% \$ \ $ \!$Blue \"$Blue \#$\$% \%$\&% \'#\(# \)$\*% \+$ \,$ \-$ \.$ \/#\0%\1% \2#\3# \4$ \5$ \6*\7%\8%\9%\:% \;&\<%\=$A constant tightness, aching, twitching, tingly feeling. I take Ibuprofen for it because the 3 doctors I have seen have informed me that there is nothing they can do. It is something I have to live with.\>$It causes my teeth and jaw to ache constantly. I avoid eating any chewy foods because that seems to exacerbate it. I quit smoking because that too seemed to make it worse.\?%\@$I have lost one upper molar on the upper left side, but the other one was able to be saved with capping, but the dentist was unsure for how long. \A$\B%t\C$kThe left side of lips sometimes twitch, especially the lower lip. It looks as if it is trembling sometimes.\D% \E$\F%@\G$7I have floaters constantly, especially in bright light. \H$\I% \J$ \K$ \L$ \M&\N%\O%\P%\Q% \R$ \S$\T%\U%\V%\W%.\X&%I was informed there is no treatment.\Y% \Z$\[% \\$\]%8\^$/Multiple Sclerosis, but a very distant relative\_% \`$ \a$\b%\c% \d$\e% \f$ \g& \h& \i& \j$\k%\l%\m% \n$\o% \p$\q%~ ]#S@]$ Kyla Meyer ]$]$ Littleton]$Colorado ]$USA ]$ ]$]$kylacmb@yahoo.com~ ] #9@] $Female] $Right] $ Parry-Romberg] $]$Romberg]$ Skin Changes ]$ ]$]+2@+9@!]+@^ D]D]]% ]$Left]$Lower]% ]$ ]$]% ]$ ]$]% ]$ ] $]!$Brown]"$Brown ]#$]$%^]%$UI don't personally but patches of white hair starting in childhood runs in my family.]&% ]'#](# ])$]*% ]+$ ],$ ]-$ ].$ ]/#]0%]1%~ ]2#8@!]33@^3 D]2D]c]4$Zsevere constant non throbbing pain concentrated in the forehead and lower back of the head ]5$Both~ ]6*@]7%]8%]94]:%];&nausea]<% ]=$ ]>$]?%]@$I'm not sure if it's related or not...my jaw now sits crooked to one side, I grind my teeth and the wear on them is now uneven. ]A$]B% ]C$]D% ]E$]F% ]G$ ]H$]I% ]J$]K$sunken area under left eye, loss of padding over that cheek, dimple/dent on left side of nose, change in contour of actual cheekbone, nostril shape difference on left side, ]L$ ]M&]N%]O%]P%]Q% ]R$ ]S$]T%]U%]V%]W% ]X&]Y% ]Z$][% ]\$]]%K]^$Bother types of facial asymmetry, but that the people are born with]_%X]`$Obeen knocked in the head (and to unconsciousness several times) since childhood ]a$]b%]c%X]d$Othe development of my first symptoms seemed so coincide with first menstruation]e% ]f$ ]g& ]h& ]i&5]j$,Relatives with facial assymmetry -whats this]k%]l%]m% ]n$]o% ]p$]q%~ ^#T@^$ Lorin Marlowe^$920 White Oaks Road^$ Mooresville^$North Carolina ^$USA^$28115^$ 704-799-6712^$Tracing30@aol.com~ ^ # @^ $Female^ $Right^ $ Parry-Romberg^ $ ^$^$ Skin Changes ^$ ^$^+@+@!^+@_ D^D^^% ^$Left^$Upper^% ^$ ^$^% ^$ ^$^% ^$ ^ $ ^!$Blue ^"$Blue ^#$^$%^%$Baldness^&% ^'#^(# ^)$^*% ^+$ ^,$ ^-$ ^.$ ^/#^0%^1%~ ^2#@!^33@`3 D^2D^ ^4$ ^5$Left~ ^6*@^7%^8%^9%^:%#^;(nausea, vomiting, arm pain^<%^=$ left side ^>$^?% ^@$ ^A$^B% ^C$^D%^E$ loss of hair^F%^G$nearsightedness ^H$^I% ^J$D^K$;Baldness, sensitivity to light and sound, easy fatigability ^L$ ^M&^N%^O%^P%^Q% ^R$ ^S$^T%^U%^V%^W% ^X&^Y% ^Z$^[%G^\$>family with history of seizures but no one on daily medication^]%H^^$?maternal grandmother has had three strokes, first one at age 40^_% ^`$ ^a$^b%^c%TONSIL SURGERYa^d$XHad tonsels removed, complications during surgery, happened around the time of PRS onset^e% ^f$W^g&NLorin has frequent nose bleeds with and without being preceeded by a headache. ^h& ^i& ^j$^k%^l%^m% ^n$^o% ^p$^q%~ _#T@_$ Mary Toledo_$29327 Cordell Court_$Randolph_$ Minnesota _$USA_$55065_$ 507-645-7795_$mary.toledo@smead.com~ _ #I@_ $Female_ $Right _ $PFHA_ $_$Romberg_$ Skin Changes _$ _$_+@+@!_+@` D_D__%_$Right _$_% _$ _$_% _$ _$_% _$ _ $ _!$Blue _"$Blue _#$_$% _%$_&% _'#_(# _)$_*% _+$ _,$ _-$ _.$ _/#_0%_1% _2#_3# _4$ _5$ _6*_7%_8%_9%_:% _;&_<% _=$ _>$_?%_@$My upper jaw was pulled up on the right side. My teeth were pulled to the right. All teeth on bottom right are loose, because not enough bone for the smaller root to set in`_A$WI had surgery to correct my upper jaw and straighten my teeth, with the help of braces._B%7_C$.Lips are thinner on the right. Also pulled up._D%X_E$OBecause my eye socket is smaller on the right, my right eyebrow is pulled down._F%_G$I don't have very good sight, but I see better out of the eye on my affected side than the other, but I did have surgery on my right eye where the doctor was trying to pull the eyeball out more, stretching the optical nerve (tried twice)_H$so he could build the bone up around the eye. Because of that surgery, I can no longer move that eyeball, or blink, which causes me to have to use salve to keep it from drying out, so I don't use it when I have my glasses on._I% _J$ _K$ _L$ _M&_N%_O%_P%_Q% _R$ _S$_T%_U%_V%_W%_X&Before diagnosed, is was sent to a chiropractor. I had fallen and hit my chin just before showing signs of the disease, and my doctor thought I might have injured a nerve or something which was causing the difference._Y% _Z$_[% _\$_]% _^$__% _`$ _a$_b%_c4INJURY WITH BRUSINGz_d$qAs mentioned before, I fell down the stairs and hit my chin. It was shortly after that signs of Romberg's showed._e% _f$_g&My Romberg's was active for only a very short time, but was very aggressive. I had my first reconstructive surgery when I was 7 years old. Signs showed when I was three, but damage was very evident by the time I started school at five years old. Seemed to _h& _i& _j$_k%_l%_m% _n$_o% _p$_q%DIlsC z N 9  0) !  K ! c $ ( `vT0@av@bv@cv@dv@ev@fv@gv@hv@iv@$jv@kv$@lv@$mv@nv$@ov@pv$@qv@rv@sv@tv@Guv@vv@wv@xvw@yv@zv@{v@G|v@}v@G~v@v@~ `#T@`$Natasha Geddie`$703 Downing Drive`$ Richardson`$Texas `$USA`$75080`$(972) 783-9512`$assistforu@aol.com~ ` #C@` $Female` $Right` (En coup de sabre` $`$ Parry-Romberg`$ Skin Changes `$ `$`+,@+5@!`+@a D`D``% `$Left`$Upper`% `$ `$`% `$ `$`% `$ ` $`!$Brown`"$Brown `#$`$% `%$`&% `'#`(# `)$`*% `+$ `,$ `-$ `.$ `/#`0%`1%~ `2#.@!`33?d3 D`2D` `4$ `5$Both~ `6* @`7%`8%`9%`:%`;& Over the years, headaches have come and go. Since surgery 4/13/01, the pain has decreased significantly. I have been treated for migraines since my early 20s. In Nov/December of last year, my forehead and the crown of my head began to hurt a lot, and th`<%`=$Doctors keep telling me they "can't understand" why my forehead hurts! I did have a neurologist tell me earlier this year that I have a severe case of TMJ (which was confirmed by an MRI of my jaw) which he believed was the only cause of the headaches. `>$`?% `@$ `A$`B% `C$`D% `E$`F% `G$ `H$`I% `J$ `K$ `L$ `M&`N%`O%`P%`Q%Y`R$PI had a 3-D CT scan done of my head; and MRI of my brain, and an MRI for my jaw. `S$`T%`U%`V%`W%`X&I had a Parry-cranial flap procedure; the surgeons removed tissue from the top of my head, and transplanted it into my forehead, and excised the scar on my face. There is now a single line scar (that is still healing, slowly), and the caved-in appearance `Y% `Z$`[% `\$`]% `^$`_%a``$XI suffered numerous head injuries as a child, which required stitches a couple of times. `a$`b%`c%STRESS`d$I was under a very significant amount of stress, working out of state on a trial, at the time my forehead and head began to hurt and burn (this was in Nov. of 2000). When I was 14 and it initially appeared, I was also under extremely emotional stress.`e% `f$`g&TMJ - my neurologist advises my TMJ is a result of PRS (Parry-Romberg Syndrome). In the 1980s, I was the founder of the first Texas chapter of the United Scleroderma Foundation (USF). At that time, there were very few people within the organization that "`h&At an early age I was labeled a child prodigy because I started playing music at the age of 3. During the first decade of my life, I was a victim of severe child abuse; the State of Texas permanently removed me from my adoptive parent's home when I was 11`i&I would like to know if others suffered a single (or more) head injury(ies) as a child. I have read on the NORD web-site that this is one common factor among individuals with PRS. I am in the process of starting a non-profit organization with a lady in NY `j$`k%`l%`m% `n$`o% `p$`q%~ a#@U@a$Petra R. Medinaa$6647 So. Clarkson St.a$ Centenniala$Colorado a$USAa$80121a$ 303-730-7399a$prmedina@hotmail.com~ a #M@a $Femalea $Righta $ Parry-Romberga $ a$a$ Skin Changesa$dark mark down the center of my face from my forehead to my chin and right half of my tongue is smaller, teeth on right side were crammed together when I was a child, wore braces a$a+@+E@!a+A@b DaDaa%a$Right a$Botha% a$ a$a% a$ a$a% a$ a $a!$Browna"$Brown a#$a$% a%$a&% a'#a(# a)$a*% a+$ a,$ a-$ a.$ a/#a0%a1% a2#a3# a4$ a5$ a6*a7%a8%a9%a:% a;&a<% a=$ a>$a?%a@$the teeth on my right side were crooked and on top of each other, have very little bone left to hold the teeth in, have upper dentures, lower right side no molars left plus 3 or 4 others, gums bad,OaA$Fhad to have gum surgery in 1977 on lower, couldn't top, but lost teethaB%aC$right side smalleraD% aE$aF%gaG$^right eye is lower but have corrective glasses to raise sight up and focus both eyes together. aH$aI%%aJ$right side of tongue smaller.aK$%lower eyelashes missing on right side aL$ aM&aN%aO%aP%aQ% aR$ aS$aT%aU%aV%aW% aX&aY% aZ$a[% a\$a]% a^$a_% a`$ aa$ab%ac%ad$maybe-I was caught in a snow blizzard because I missed my ride and my parents told me that they thought that was what caused my face to be that way. I don't think they or any doctor knew if they took me at allae% af$ ag& ah& ai& aj$ak%al%am% an$ao% ap$aq%~ b#U@ b$Jamib$ PO Box 4037b$ Morgantonb$North Carolina b$USAb$28655b$ 828-584-9956)b$ my_prescious_izzybelle@yahoo.com~ b #2@b $Femaleb $Rightb $ Parry-Rombergb $b)linear sclerodermab$ Skin Changes b$ b$b+@+@!b+@c DbDbb%b$Right b$b%b$Right b$b%b$Right b$b%b$Right b $ b!$Blue b"$Blue b#$b$% b%$b&% b'#b(# b)$b*% b+$ b,$ b-$ b.$ b/#b0%b1% b2#b3# b4$ b5$ b6*b7%b8%b9%b:% b;&b<% b=$ b>$b?%sb@$jMy teeth/gums are in fair condition since I have had this disease. But I am in the process of fixing that. bA$bB%[bC$RMy right side of my lip is smaller than my left. My smile looks crooked sometimes.bD% bE$bF%5bG$,But I have had glasses since I was 10yrs old bH$bI%@bJ$7My right side of my tongue is smaller than my left sidebK$I have diabetes, Polycystic ovarian syndrome and scleroderma or parry rombergs. Very confusing...I have also had hypertension since the age of 5-6 yrs old. bL$ bM&bN%bO%bP%bQ%NbR$EI had a biopsy of my right arm.....it showed scleroderma at age 6yrs. bS$bT%bU%bV%bW%(bX&Nothing...but physical therapy.bY% bZ$b[% b\$b]% b^$b_% b`$ ba$bb%bc% bd$be% bf$ bg& bh& bi& bj$bk%bl%bm% bn$bo% bp$bq%~ c#V@c$Rose M. Goodmanc$ 136 Levo Roadc$Troutmanc$North Carolina c$USAc$28166c$ 704-799-8251$c$rosebudgoodman@netscape.net~ c #D@c $Femalec $Rightc $ Parry-Rombergc $c(En coup de sabrec$ Skin ChangesAc$8A dark circle on my neck that simply would not wash off. c$c+*@+*@!c+d DcDcc%c$Rightc$Lowerc% c$ c$c% c$ c$c% c$ c $c!$Brownc"$Brown c#$c$%Ic%$@a blonde streak on the back right side - but not very noticeablec&% c'#c(# c)$c*% c+$ c,$ c-$ c.$ c/#c0%c1% c2#c3# c4$ c5$ c6*c7%c8%c9%c:% c;&c<%c=$It's never been great enough for me to discuss with the doctors. But it is a tightening of the muscles in the afflicted area which is my right chin/cheek.c>$yI am told by my plastic surgeon that my case is the mildest that he has seen (he has several patients with this disease.)c?%c@$You can clearly see a dip in my jaw bone in xrays. My lower jaw is smaller than my top jaw so I have had teeth pulled from the top and have worn braces for the past two years cA$cB%GcC$>I have thin lips but it is even thinner in the afflicted area.cD% cE$cF% cG$ cH$cI% cJ$ cK$ cL$ cM&cN%cO%cP%cQ% cR$ cS$cT%cU%cV%cW% cX&cY% cZ$c[% c\$c]% c^$c_% c`$ ca$cb%cc% cd$ce% cf$cg&The discoloration that began on my neck covers most of the right side of my neck and continues up to the underside of my right ear. I can only wear special makeup (for birthmarks) as regular makeup will not adhere to the skin. I have had 3 fat grafts (rem ch&^ci&UI grew up in CT and NY but met a girl here in NC about my same age with this desease. cj$ck%cl%cm% cn$co% cp$cq%~ d#@V@d$Melissa Walbert d$d$ Bowling Greend$Kentucky d$USA d$ d$;d$2walberthouse@earthlink.net: melissa_walbert@hotma~ d #>@d $Femaled $Rightd $ Parry-Rombergd $ d$d$ Skin Changes5d$,bluish bruise like areas on my nose at age 3 d$d+@+=@!d+:@e DdDdd% d$Left d$Bothd% d$ d$d% d$ d$d% d$ d $d!$Hazeld"$Hazel d#$d$% d%$d&% d'#d(# d)$d*% d+$ d,$ d-$ d.$ d/#d0%d1%~ d2#3@!d330@q3 Dd2DdOd4$Fbasically classic migraine: very sensitive to sound and light, intense d5$Both~ d6*@d7%d8%d9%d:%d;&extreme fatigued<% d=$ d>$d?%9d@$0teeth don'y touch in places on the affected side dA$dB%!dC$top left lip disappeareddD% dE$dF% dG$ dH$dI% dJ$ dK$ dL$ dM&dN%dO%dP%dQ% dR$ dS$dT%dU%dV%dW% dX&dY% dZ$d[% d\$d]% d^$d_% d`$ da$db%dc4INJURY - STITCHESdd$My Dad said that when I was 2 1/2 I was hit on the nose and cut by a rusty peice of metal while playing, a few months later the discoloration began.de% df$ dg& dh& di& dj$dk%dl%dm% dn$do% dp$dq%~ e#V@e$Beth McAllister e$e$ West Baldwine$Maine e$USAe$04091 e$e$stella@psouth.net~ e #$@e $Femalee $Righte $Romberge $ e$e$ Skin Changes e$ e$e+@+"@!e+@f DeDee%e$Right e$Bothe% e$ e$e% e$ e$e% e$ e $e!$Hazele"$Hazel e#$e$%0e%$'Bald spot on right side of head, on tope&% e'#e(# e)$e*% e+$ e,$ e-$ e.$ e/#e0%e1% e2#e3# e4$ e5$ e6*e7%e8%e9%e:% e;&e<% e=$ e>$e?%5e@$,The teeth on the right are much more crooked eA$eB% eC$eD% eE$eF% eG$ eH$eI% eJ$eK$Beth's chin was the first obvious sign. People often ask her "why she has two chins." Also the side of her face, beside her eye (right side) is very much indented.oeL$fHer nose has an obvious line down the middle and the right nostril is very much smaller than the left. eM&eN%eO%eP%eQ% eR$ eS$eT%eU%eV%eW% eX&eY% eZ$e[% e\$e]% e^$e_%ae`$XWhen she was two she fell and split her forehead open, requiring stitches above her eye. ea$eb%ec%ied$`She was diagnosed with a small patch of scleroderma beside her right eye somewhere around age 3.ee% ef$ eg& eh& ei& ej$ek%el%em% en$eo% ep$eq%~ f#W@f$ Mary E. Lydonf$48 Pleasant Streetf$ Manchesterf$ Massachusetts f$USAf$01944f$ 978 526 4754f$ annasmom1~ f #G@f $Femalef $Rightf $Rombergf $f$ Parry-Rombergf$ Skin ChangesAf$8My skin change change was a bruise that never went away. f$f+#@+4@!f+%@g DfDff%f$Right f$f% f$ f$f% f$ f$f% f$ f $ f!$Blue f"$Blue f#$f$% f%$f&%~ f'#F@!f(#@A@( Df'Dff)$Petit mal, and I have only had two seizures two months apart. Both seizures occurred in my sleep. They are controlled by anti-convulsives.f*% f+$ f,$ f-$85f.$,Tegretol 200mg 3x Lamictal 25mg 2 tablets 2x~ f/#F@f0%f1% f2#f3# f4$ f5$ f6*f7%f8%f9%f:% f;&f<% f=$ f>$f?% f@$ fA$fB% fC$fD% fE$fF%fG$The vision in my right eye is much poorer than left. There is optic nerve damage, eye doctor says that damage is not ongoing. He has monitored it for 17 years. fH$fI% fJ$ fK$ fL$ fM&fN%fO%fP%fQ% fR$ fS$fT%fU%fV%fW%GfX&>I had liquid silicone injections in my cheek and chin in 1974.fY% fZ$f[% f\$f]% f^$f_% f`$ fa$fb%fc% fd$fe% ff$ fg& fh& fi& fj$fk%fl%fm% fn$fo% fp$fq%~ g#@W@g$Siomara M. Lagunag$928 Larchwood Avenueg$Hacienda Heightsg$ California g$USAg$ 91745-1527g$ (626)536-7102!g$xiomy200091745@yahoo.com~ g #;@g $Femaleg $Rightg $Rombergg $ g$g$ Skin Changes?g$6The tissue on the left side of my lip began to atrophy g$g+(@+5@!g+"@h DgDgg% g$Left g$Bothg% g$Left g$g% g$ g$g% g$ g $g!$Browng"$Brown g#$g$% g%$g&% g'#g(# g)$g*% g+$ g,$ g-$ g.$ g/#g0%g1% g2#g3# g4$ g5$ g6*g7%g8%g9%g:% g;&g<%}g=$tThe pain occurs on the left side. The doctors did not say anything, they just said that it was part of the syndrome. g>$g?% g@$ gA$gB%9gC$0The left side of the lip is raised and recessed.gD%GgE$>The eyebrow does not match with the bone structure of the eye.gF%gG$My left eye has dry eye syndrome and my peripheral and I have very little peripheral vision. I am almost blind from my left eye gH$gI% gJ$5gK$,coupe de sabre on the left side of my skull. gL$ gM&gN%gO%gP%gQ% gR$ gS$gT%gU%gV%gW% gX&gY% gZ$g[% g\$g]% g^$g_%Cg`$:I had a garage door fall on my head when I was 8 years old ga$gb%gc%gd$ I don't knowge% gf$ gg& gh& gi& gj$gk%gl%gm% gn$go% gp$gq%~ h#W@h$ Natalie Bruh$5835 SW 89 AVEh$Miamih$Florida h$USAh$33173h$ 305-275-8422h$epslimjim@aol.com~ h #4@h $Femaleh $Righth $ Parry-Rombergh $ h$h$ Skin Changesyh$pDeformity of the left side of my face. My fat of my left side of my lip and chin is pretty much completely gone. h$h+.@+1@!h+@i DhDhh% h$Lefth$Lowerh% h$ h$h% h$ h$h% h$ h $h!$Brownh"$Brown h#$h$% h%$h&% h'#h(# h)$h*% h+$ h,$ h-$ h.$ h/#h0%h1% h2#h3# h4$ h5$ h6*h7%h8%h9%h:% h;&h<%qh=$hLeft side of my face where the fat is absorbed, it sometimes has either a tingling feeling or a pounding h>$h?% h@$ hA$hB%:hC$1Left side of my lips is absorbed and discoloured.hD% hE$hF% hG$ hH$hI% hJ$ hK$ hL$ hM&hN%hO%hP%hQ% hR$ hS$hT%hU%hV%hW% hX&hY% hZ$h[% h\$h]% h^$h_% h`$ ha$hb%hc% hd$he% hf$ hg& hh& hi& hj$hk%hl%hm% hn$ho% hp$hq%~ i#X@i$ Mary Campi$1118 Bardell Dr.i$ Wilmingtoni$Delaware i$USAi$19808i$(302) 994-7616i$mec1118@aol.com~ i #D@i $Femalei $Righti $ Parry-Rombergi $i(En coup de sabrei$ Skin Changes i$ i$i+@+@!i+@j DiDii% i$Left i$Bothi% i$ i$i% i$ i$i% i$ i $i!$Browni"$Brown i#$i$% i%$i&% i'#i(# i)$i*% i+$ i,$ i-$ i.$ i/#i0%i1% i2#i3# i4$ i5$ i6*i7%i8%i9%i:% i;&i<% i=$ i>$i?% i@$ iA$iB%viC$mLower lip, left side, was flattened, but was rebuilt during my teens using tissue from inside my right cheek.iD% iE$iF% iG$ iH$iI%RiJ$ILeft side has a narrow line/notch running down it which has no taste budsiK$In addition to an en coup de sabre line (which was surgically cut away at age 6, leaving a scar in its place) the bony portion of the left side of my forehead is smaller in places than the rightiL$Left side of my nose is smaller than the right. Left side lower jawbone as well as the tissue covering it is affected, as is the left side chin and neck. iM&iN%iO%iP%iQ% iR$ iS$iT%iU%iV%iW%`iX&WSurgery in the 1970s and also injections of liquid silicone (which were not effective.)iY%TRUE /NOiZ$My mother, 70, has had Raynaud's symptoms for two decades and it has very recently been suggested she may have scleroderma, though this has not been definitively diagnosed.i[% i\$i]%i^$My mother also has Meniere's disease, an autoimmune condition of the inner ear, and my sister's son has Type 1 (juvenile) Diabetes, also linked to autoimmunity.i_% i`$ ia$ib%ic% id$ie% if$ ig& ih& ii& ij$ik%il%im% in$io% ip$iq%~ j#X@ j$Martha M. Hollingsworthj$2109 Maiden Lanej$Roanokej$Virginia j$USAj$24015j$ 540-344-3878j$martyh29@home.com~ j #E@j $Femalej $Rightj $Rombergj $ j$j$ Skin Changes j$ j$j+&@+E@!j+?@k DjDjj%j$Rightj$Upperj% j$ j$j% j$ j$j% j$ j $j!$Brownj"$Brown j#$j$% j%$j&% j'#j(# j)$j*% j+$ j,$ j-$ j.$ j/#j0%j1% j2#j3# j4$ j5$ j6*j7%j8%j9%j:% j;&j<% j=$ j>$j?% j@$ jA$jB% jC$jD% jE$jF% jG$ jH$jI% jJ$ jK$ jL$ jM&jN%jO%jP%jQ% jR$ jS$jT%jU%jV%jW% jX&jY% jZ$j[% j\$j]% j^$j_% j`$ ja$jb%jc4 BEE STING jd$je% jf$jg&When I was about 11 or 12, I started noticing that my right forehead appeared different and that a vein running vertically in the center of my forehead was more apparent. At about the same time, I was stung by a bee at my hairline and this was thought to  jh& ji& jj$jk%jl%jm% jn$jo% jp$jq%~ k#X@k$Patricia Del Mercadok$3941 Shaker Run Circlek$ Fairfieldk$ California k$USAk$94533k$ 707-428-1068$k$delmercado@worldnet.att.net~ k #E@k $Femalek $Rightk $Rombergk $ k$k$ Skin Changesk$Very insidious facial hemiatrophy on the left side of my face. I now have thinning skin on the affected side of my face, with loss of eyebrow and receding hairline (slight) on the affected side. k$k+7@+;@!k+@l DkDkk% k$Left k$Bothk% k$ k$k% k$ k$k% k$ k $ k!$Blue k"$Blue k#$k$% k%$k&% k'#k(# k)$k*% k+$Both k,$Both k-$ k.$ k/#k0%k1% k2#k3# k4$ k5$ k6*k7%k8%k9%k:% k;&k<% k=$ k>$k?% k@$ kA$kB% kC$kD%"kE$loss of hair on left sidekF% kG$ kH$kI% kJ$ kK$ kL$ kM&kN%kO%kP%kQ% kR$ kS$kT%kU%kV%kW%kX&The prednisone and Imuran medication were actually given for polymyositis which I developed after taking and antidepressant called SerzonekY% kZ$k[% k\$k]% k^$k_% k`$ ka$kb%kc% kd$ke% kf$ kg& kh& ki& kj$kk%kl%km% kn$ko% kp$kq%~ l#Y@l$Kathy S. McCormickl$3415 Havershire Drl$ Missouri Cityl$Texas l$USAl$77459l$ 281-208-1927%l$kathymac@pet.med.uth.tmc.edu~ l #G@l $Female l $Leftl $ Parry-Rombergl $ l$l$ Skin Changesl$After a year at my current job (1996), many co-workers kept asking if I'd been "hit" or been in an accident because my left eye and left cheekbone seemed to be "indented" and "bruised". It had been so prior to that. l$l+D@+E@!l+?m DlDll% l$Leftl$Lowerl% l$ l$l% l$ l$l% l$ l $ l!$Blue l"$Blue l#$l$%l%$My hair is not different colours, but I actually am missing hair. I have a "bald spot" the size of a half dollar that also has a crooked "line" (approx. 1/4 in. wide) leading from it to my forehead that is also missing hair.l&% l'#l(# l)$l*% l+$ l,$ l-$ l.$ l/#l0%l1% l2#l3# l4$ l5$ l6*l7%l8%l9%l:% l;&l<%l=$This has just started to occur in the past 6-8 months. I have not been diagnosed by a doctor, however my mother has trigeminal neuralgia (she is 75 now) which started in her mid to late 50'sl>$She has been placed on anti-epileptic drugs to try and control the pain. She DOES NOT have Parry Romberg's. No one in my family of family tree has PRS.l?% l@$ lA$lB% lC$lD%flE$]My left eybrow is smaller and has less hairs. I have almost NO lower eyelash on the left eye.lF%lG$My left eye has always had poorer vision (20/200) compared to my right (20/80) until I had RK surgery to correct my myopia and astigmatism performed on both eyes in 1992.ulH$lI now have 20/15 vision in both eyes. I have noticed that I have re-developed an astigmatism in my left eye.lI%nlJ$eThe left side of my palate has a considerable amount of wasting of soft tissue compared to the right.lK$I also have developed a "cleft" in my chin (just inthe past 2 years) which I believe is related to the en-coup de sabre. No one in my family has a cleft chin. lL$ lM&lN%lO%lP%lQ%lR$A neurologist tested my left/right arm, leg, hand strength. Also did a test where needles were inserted into the facial muscles (bilaterally) and electricity was conducted through them to test the facial muscles for weaknesses. lS$lT%lU%lV%lW%*lX&!I was put on 200mg BID Plaquenil.lY% lZ$l[% l\$l]%5l^$,My mom has trigeminal neuralgia (Right side)l_% l`$ la$lb%lc% ld$le% lf$ lg& lh& li& lj$lk%ll%lm% ln$lo% lp$lq%~ m#@Y@m$ Julie Backem$98 Forest Drivem$Boisem$Idaho m$USAm$83716m$ 208-336-6878!m$juliebacke@earthlink.net~ m #H@m $Female m $Leftm $Rombergm $ m$PFHAm$ Skin Changes7m$.discoloration under my right eye - "black eye" m$m+@+D@!m+A@n DmDmm%m$Right m$Bothm% m$ m$m% m$ m$m% m$ m $ m!$ m"$ m#$m$%8m%$/white hair developed faster on the right templem&% m'#m(# m)$m*% m+$ m,$ m-$ m.$ m/#m0%m1% m2#m3# m4$ m5$ m6*m7%m8%m9%m:% m;&m<%m=$A sharp stabbing pain on the left side, right above jaw line - occurs very infrequently but in July of this year, occurred daily for a week or more. m>$m?% m@$ mA$mB%umC$lwhen younger, my lips on the right side had uneven bumps - also, discoloration above the lips on right side.mD%$mE$lower on forehead than leftmF% mG$ mH$mI% mJ$mK$Discoloration below right eye and neck under jaw line and also above right lip. Tissue melted away from right temple extending down right side of face. mL$ mM&mN%mO%mP%mQ% mR$ mS$mT%mU%mV%mW%mX&Have looked into reconstructuve surgery but did proceed with the surgery because of fear of the invasive procedures and more recently, health insurance denied coverage for the surgery - did not appeal decision because of my own uncertainty of the extensivmY% mZ$m[% m\$m]%0m^$'Mother had kidney and thyroid problems.m_% m`$ ma$mb%mc% md$me% mf$mg&I am still discovery ailments that might be associated with the hemifacial atrophy. Recently, pains on the left side of my face and frequent sinus infections may have connection to the hemifacial on the right. Consequently, sought alternative treatment ofmh&As stated earlier, I am still learning more about this disease and how it has affected my body. Am still making associations with symtoms that I previously thought would unrelated - particularly with the left side of my face - the past year, I have had se mi& mj$mk%ml%mm% mn$mo% mp$mq%~ n#Y@n$Moises Jimenezn$2119 madison ct.n$ Chowchillan$ California n$USAn$93610n$(559) 665-7213n$tj_soldya@hotmail.com~ n #.@ n $Malen $Rightn $ Parry-Rombergn $ n$n$ Skin Changesn$When i was born i was a normal baby but when i was about 3 yrs. old my right side of my face started to look different.I am missing some tissue around the cheek area, and i have a dent on my forehead. 'coup de sabre' n$n+@+@!n+?o DnDnn%n$Right n$Bothn% n$ n$n% n$ n$n% n$ n $n!$Brownn"$Brown n#$n$% n%$n&% n'#n(# n)$n*% n+$ n,$ n-$ n.$ n/#n0%n1% n2#n3# n4$ n5$ n6*n7%n8%n9%n:% n;&n<% n=$ n>$n?% n@$ nA$nB% nC$nD% nE$nF% nG$ nH$nI% nJ$ nK$ nL$ nM&nN%nO%nP%nQ% nR$ nS$nT%nU%nV%nW% nX&nY% nZ$n[% n\$n]% n^$n_% n`$ na$nb%nc% nd$ne% nf$ ng& nh& ni& nj$nk%nl%nm% nn$no% np$nq%~ o#Z@o$ Hannah Bodnaro$ p.o. box 63o$ Millsboroo$ Pennsylvania o$USAo$15348o$ 724-377-1179 o$~ o #$@o $Female o $Lefto $Rombergo $ o$o$ Skin Changes o$ o$o+@+"@!o+@p DoDoo%o$Righto$Lowero% o$ o$o% o$ o$o% o$ o $ o!$Blue o"$Blue o#$o$% o%$o&% o'#o(# o)$o*% o+$ o,$ o-$ o.$ o/#o0%o1% o2#o3# o4$ o5$ o6*o7%o8%o9%o:% o;&o<% o=$ o>$o?% o@$ oA$oB% oC$oD% oE$oF% oG$ oH$oI% oJ$ oK$ oL$ oM&oN%oO%oP%oQ% oR$ oS$oT%oU%oV%oW% oX&oY% oZ$o[% o\$o]% o^$o_% o`$ oa$ob%oc% od$oe% of$ og& oh& oi& oj$ok%ol%om% on$oo% op$oq%~ p#Z@p$Pam Kerr (for Nikki) p$ p$ p$ p$USA p$ p$p$kerr4@adelphia.net~ p #"@p $Femalep $Rightp (En coup de sabrep $ p$p$ Skin Changes p$ p$p+"@+"@!p+q DpDpp%p$Right p$p% p$ p$p% p$ p$p% p$ p $ p!$Blue p"$Blue p#$p$%:p%$1Losing patches of hair on the scalp near foreheadp&% p'#p(# p)$p*% p+$ p,$ p-$ p.$ p/#p0%p1% p2#p3# p4$ p5$ p6*p7%p8%p9%p:% p;&p<% p=$ p>$p?% p@$ pA$pB% pC$pD% pE$pF% pG$ pH$pI% pJ$:pK$1Losing patches of hair on the scalp near forehead pL$ pM&pN%pO%pP%pQ% pR$ pS$pT%pU%pV%pW%.pX&%Steroid IV 3 times/month MethotrexatepY% pZ$p[% p\$p]% p^$p_% p`$ pa$pb%pc% pd$pe% pf$ pg& ph& pi& pj$pk%pl%pm% pn$po% pp$pq%~ q#[@(q$Annette Marie (Halladay) Morrisq$ 967 Coolidgeq$ River Rougeq$Michigan q$USAq$ 48218-1608q$ 313-843-9656q$SgtBooks@att.net~ q #A@q $Femaleq $Rightq $ Parry-Rombergq $ q$PFHAq$ Skin Changes$q$my chin was growing crooked q$q+&@+@@!q+6@r DqDqq%q$Rightq$Lowerq% q$ q$q% q$ q$q% q$ q $q!$Hazelq"$Hazel q#$q$% q%$q&% q'#q(# q)$q*% q+$ q,$ q-$ q.$ q/#q0%q1%~ q2#1@!q33@u3 Dq2DqWq4$Nhere really isnt a "way to have a migraine" but basically, the pain, builds as q5$Both~ q6*@q7%q8%q9%q:%q;&time goes... starts in behinds the right ear, around the back and goes up and to the front, over to the other side. It generally is on the right side, completely before it goes to the left.q<% q=$ q>$q?%^q@$Uver the time from 1985 till, present I have had all but 9 lower (front) teeth pulled. qA$qB%6qC$-I have close to no top lip on the right side.qD% qE$qF%[qG$RI do weat glasses, have since 1987, but Im not sure that it has anything to do it. qH$qI% qJ$ qK$ qL$ qM&qN%qO%qP%qQ%~qR$uBonescan (not sure of the technical name of it) have had really intense xray, that took like an hour to xray my head. qS$qT%qU%qV%qW% qX&qY% qZ$q[% q\$q]% q^$q_% q`$ qa$qb%qc4INJURY - STITCHESqd$had a REALLY bad infection from a blow to the head when I was young. From what I was told by my Aunt, My brother it me with a little metal gun, and got infected.qe% qf$ qg& qh& qi& qj$qk%ql%qm% qn$qo% qp$qq%~ r#@[@r$ Teresa Burksr$ P.O. Box 1804r$Cantonr$Georgia r$USAr$30114 r$r$watisacherokee@aol.com~ r #G@r $Femaler $Right r $PFHA r $$r$ Skin ChangesKr$Batrophy of the lower right side of my face, staring around age 18. r$r+1@+A@!r+2@s DrDrr%r$Rightr$Lowerr% r$ r$r% r$ r$r% r$ r $r!$Greenr"$Green r#$r$% r%$r&% r'#r(# r)$r*% r+$ r,$ r-$ r.$ r/#r0%r1% r2#r3# r4$ r5$ r6*r7%r8%r9%r:% r;&r<%r=$I don't have bad headaches as stated above, but I do have pain along the right side of my face, mainly in the eye, nose and upper mouth area. r>$r?%Xr@$OI say yes, because I've had tooth pain, with no identifable objective findings. rA$rB%;rC$2Indentation on the upper lip on the affected side.rD% rE$rF%rG$I was born with a lazy eye, the funny thing is the lazy eye is on the affected side of my face. This right eye has always been somewhat smaller than the left eye. In addition, the right eye has sunken somewhat into my skull (more so that the left eye). rH$rI% rJ$rK$around the lower jaw line on the affected side, the skin turned almost a bruised-like blue color, because of the fat that was wasting away under the skin.rL$low level of self-esteem---feeling that I don't have a pretty face, and that men know it, and show it in their actions toward me. It has affected my social life. rM&rN%rO%rP%rQ%rR$None of the above. What's funny it did not even cross my mind at the time I was dx'd.....now, looking back, it makes me mad that the doctor did not even address the possible need for tests. rS$rT%rU%rV%rW%0rX&'Have had, I think, around 17 surgeries.rY% rZ$r[% r\$r]% r^$r_%r`$skull fx at age 19 ra$rb%rc4INJURY WITH BRUSINGrd$I first noticed it when I was in the hospital from a car accident, this is when I noticed the atrophy around my nose. Along with the skull fx mentioned above, I had received a blow the the face.re% rf$ rg& rh& ri& rj$rk%rl%rm% rn$ro% rp$rq%~ s#[@s$Sean William Prices$5425 dupont st.s$ chattanoogas$ Tennessee s$USAs$37412s$1-423-867-4691s$slysp1@aol.com~ s #A@ s $Males $Rights (En coup de sabres $ s$s$ Skin Changes s$ s$s+ @+=@!s+5@t DsDss% s$Left s$Boths% s$ s$s% s$ s$s% s$ s $s!$Browns"$Brown s#$s$%s%$som eloss of hairs&% s'#s(# s)$s*% s+$ s,$ s-$ s.$ s/#s0%s1% s2#s3# s4$ s5$ s6*s7%s8%s9%s:% s;&s<% s=$ s>$s?% s@$ sA$sB% sC$sD% sE$sF% sG$ sH$sI%5sJ$,an inch long indentation in middle of tongue(sK$some loss of hair near forehead sL$ sM&sN%sO%sP%sQ% sR$ sS$sT%sU%sV%sW% sX&sY% sZ$s[% s\$s]% s^$s_%s`$when i was 6 or 7 i hit my head hard which caused bleeding, i noticed a year or 2 later a indention where i had had accident "en coupe de sabre" sabre sa$sb%sc% sd$se% sf$ sg& sh& si& sj$sk%sl%sm% sn$so% sp$sq%~ t#\@t$yvonne demarinot$1521 NW 94 Avet$ plantationt$Florida t$USAt$33322 t$t$gococo39@hotmail.com~ t #H@t $Femalet $Rightt (En coup de sabre t $$t$ Skin Changes:t$1bald spots on head with accompanying sunken areas t$t+0@+F@!t+;@u DtDtt% t$Left t$t% t$ t$t% t$ t$t% t$ t $t!$Hazelt"$Hazel t#$t$% t%$t&% t'#t(# t)$t*% t+$ t,$ t-$ t.$ t/#t0%t1% t2#t3# t4$ t5$ t6*t7%t8%t9%t:% t;&t<% t=$ t>$t?% t@$ tA$tB% tC$tD% tE$tF% tG$ tH$tI% tJ$tK$This entire disease (au coup de sabre, and I guess I don't have the full syndrome you are describing here is located in spots on my head and is creeping out towards my forehead tL$ tM&tN%tO%tP%tQ%tR$local biopsy I visited dermatologists for years before I was diagnosed and I still can't seem to get any information even through the web page. tS$tT%tU%tV%tW%ptX&gLow dose antibotics for a several month course through a specialist in Miami. (Could it have been you?)tY% tZ$t[% t\$t]%[t^$Rfirst cousin (female) with hair loss, will have to contact her regarding conditiont_% t`$ ta$tb%tc%Wtd$Nepisode of severe leg pain and other problems a year or two prior to discoveryte% tf$tg&I would like information on how local scleroderma and this syndrome are related and where to look for information regarding my condition. th& ti& tj$tk%tl%tm% tn$to% tp$tq%~ u#@\@u$Karen Hamiltonu$9662 E. Briana Laneu$Tucsonu$Arizona u$USAu$85748u$ 520-722-3637u$Kat7221002@aol.com~ u #C@u $Femaleu $Rightu $ Parry-Rombergu $ u$PFHAu$ Skin ChangesTu$KThe first symptoms were bone and tissue degeneration when I was very young. u$u+@+@!u+?w DuDuu%u$Right u$Bothu%u$Right u$Bothu% u$ u$u% u$ u $u!$Greenu"$Green4u#$+I used to have blue eyes now they are greenu$%u%$I have a white streak on the front right side, it may just be going grey even though I am the youngest of three children and am the only one with white streaku&% u'#u(# u)$u*% u+$ u,$ u-$ u.$ u/#u0%u1%~ u2#9@!u336@x3 Du2Duu4$Very severe, thankfully I do not get them very often, but when they do occur they can last for days. I had one not too long ago that lasted for a little over a week. They are very painful. u5$Both~ u6*@u7%u8%u9%u:%u;&I do not know if this was due to the headaches or what, but the last one I had for a little over a week I had a continuous bad taste in my mouth and kept smelling something very unpleasant.u<%u=$I do not know if I had pain when I was very young, but in my late twenties the symptoms got really bad with the facial pain. My right side of my face has always had a dull ache on and off that gets to be very annoying because it is so painful.u>$I was told it was not trigeminal neuralgia, but that did start to happen in the last few years and I was put on Neurontin. I was put on that med also for the pain and weakness in my legs.u?%u@$I had four teeth on the right side (adult teeth), two were pulled when I got braces. They are very small and have little to no roots.uA$They amaze my denist to this day because I still have them. He states that because I take such good care of my teeth that they have not fallen out.uB%guC$^On the right side the upper lip is smaller than on the left side. It is sorta like a cleft lipuD% uE$uF%JuG$ASometimes I see spots, but my vision has always been rather good. uH$uI%uJ$The line down the tongue is not straight and it is more on the right side than in the middle. Also there is an indentation on the right side that is very pronouced. Sometimes the right side can tingle or have pain. uK$ uL$ uM&uN%uO%uP%uQ% uR$ uS$uT%uU%uV%uW%uX&#ErroruY% uZ$u[% u\$u]% u^$u_% u`$ ua$ub%uc% ud$ue% uf$ug&The worst symptoms are pain. I get body aches that are horrendous. I get fevers all the time, sometimes when I just have pain and no other symptoms. They are usually low grade, but I feel as if I am burning up. My immune system is impaired and I believe m uh& ui& uj$uk%ul%um% un$uo% up$uq%~ v#\@v$Kathleen Cliftv$2301 E. Francis Stv$Ontariov$ California v$USAv$91761v$ 714 2675390v$kate 102@socal.rr.com~ v #M@v $Femalev $Right v $PFHAv $v(En coup de sabrev$ Skin Changes v$ v$~ v+(@ v+v+v%v$Right v$Bothv% v$ v$v% v$ v$v% v$ v $v!$Brownv"$Brown v#$v$%Cv%$:My 'en coup de sabre' is actually on the crown of my head.v&% v'#v(#.v)$%The hair in that area has never grownv*% v+$ v,$ v-$ v.$ v/#v0%v1% v2#v3# v4$ v5$ v6*v7%v8%v9%v:% v;&v<% v=$ v>$v?%v@$My jaws lock together, especially when I am under stress since I was 11 years old. I was told it was TMJ. My teeth would not stay straightened when I had braces. They kept moving. Lips vA$vB% vC$vD% vE$vF% vG$ vH$vI% vJ$ vK$ vL$ vM&vN%vO%vP%vQ% vR$ vS$vT%vU%vV%vW%vX&The right side of my jaw, under the lower lip atrophied. For a year or so a Dr Franklin Ashley at UCLA Uiversity Medical Center, gave me silicon injections in my right cheek, above my right upper lip and under my right lower lip. This was definitely not tvY% vZ$v[% v\$v]%v^$My mother had loss of pigmentation and that was what she thought I had when she first noticed my skin was changing. My daughter was born with loss of pigmentation on her right leg.v_%v`$yI was in a serious automobile accident when I was about 8 years old. I had extensive trauma to the right side of my face. va$vb%vc%Bvd$9Stress seemed to daargen the color in the affected areas.ve% vf$ vg& vh& vi& vj$vk%vl%vm% vn$vo% vp$vq%~ w#\@w$ Nickie Snoww$550 S. Van Ness #301w$ San Franciscow$ California w$USAw$94110w$ 415-255-8817w$nickiesnow@hotmail.com~ w #@@w $Femalew $Rightw $Rombergw $ w$w$ Eye problems w$ w$w+(@+7@!w+&@x DwDww%w$Right w$w%w$Right w$w%w$Right w$w%w$Right w $ w!$Blue w"$Blue w#$w$% w%$w&% w'#w(# w)$w*% w+$ w,$ w-$ w.$ w/#w0%w1% w2#w3# w4$ w5$ w6*w7%w8%w9%w:% w;&w<% w=$ w>$w?% w@$ wA$wB%wC$yMy upper, right lip atrophied and I lost all muscle movement on the right side of my mouth--I can not pucker up very wellwD% wE$wF%wG$My right eye is always irritated or dry. My vision in my right eye has deteriorated greatly in the past 3 years. I put oily drops in at night and tape my eye closed at night, which seems to sooth the stinging in my eye. wH$wI%:wJ$1Right side of my tongue is smaller than the left.wK$wI do have an exceptionally lumpy scalp--a huge indent on the crown of my head, dents on the sides and a lumpy forehead. wL$ wM&wN%wO%wP%wQ% wR$ wS$wT%wU%wV%wW% wX&wY% wZ$w[% w\$w]%w^$Possibly, both of my parents have trouble with poor circulation, particularly on one side of the body but nothing as severe or debilitating as PRSw_% w`$ wa$wb%wc% wd$we% wf$ wg& wh& wi& wj$wk%wl%wm% wn$wo% wp$wq%~ x#]@5x$,Liz Taylor (from USA) - not elizabeth taylorx$136 willow streetx$walthamx$ Massachusetts x$USAx$02453x$ 781-894-5073x$ejtaylor@mediaone.net~ x #D@x $Femalex $Rightx $Rombergx $ x$x$ Skin Changes x$ x$x+3@+9@!x+@y DxDxx%x$Rightx$Lowerx% x$ x$x%x$Right x$x% x$ x $x!$Brownx"$Brown x#$x$% x%$x&% x'#x(# x)$x*% x+$ x,$ x-$ x.$ x/#x0%x1%~ x2#>@!x33&@|3 Dx2DxAx4$8no- just nausea, flashing lights, need to be in the dark x5$Left~ x6*@x7%x8%x9%x:% x;&x<% x=$ x>$x?% x@$ xA$xB%exC$\atrophied and turned up. i drool occasionally while drinking and it is hard to eat sometimesxD% xE$xF% xG$ xH$xI% xJ$2xK$)tmj and jaw spasms; eye socket sticks out xL$ xM&xN%xO%xP%xQ% xR$ xS$xT%xU%xV%xW% xX&xY% xZ$x[% x\$x]% x^$x_% x`$ xa$xb%xc% xd$xe% xf$xg&i hav diabetes, asthma and graves disease. I was diagnosed with the diabetes at 15 and rombeergs followed. I also get ganglions on my hands and feet and have a shoulder and hip problem (scar tissue). No one ever associated them to romberg's. they always b xh& xi& xj$xk%xl%xm% xn$xo% xp$xq%~ y#@]@y$L. Kellyy$221 S. Wolf Roady$Wheelingy$Illinois y$USAy$60090 y$y$lkelly@d21.k12.il.us~ y #*@y $Femaley $Righty $Rombergy $ y$y$ Skin Changes y$ y$y+@+@!y+@z DyDyy% y$Left y$Bothy% y$ y$y% y$ y$y% y$ y $y!$Greeny"$Green y#$y$% y%$y&% y'#y(# y)$y*% y+$ y,$ y-$ y.$ y/#y0%y1% y2#y3# y4$ y5$ y6*y7%y8%y9%y:% y;&y<% y=$ y>$y?% y@$ yA$yB% yC$yD% yE$yF% yG$ yH$yI% yJ$ yK$ yL$ yM&yN%yO%yP%yQ% yR$ yS$yT%yU%yV%yW% yX&yY% yZ$y[% y\$y]% y^$y_%Iy`$@Hit her chin when she was 2. She fell on the ground off a swing. ya$yb%yc%yd$Maybe the fall.ye% yf$ yg& yh& yi& yj$yk%yl%ym% yn$yo% yp$yq%~ z#]@z$Denise H.W. Eisenberg z$3721 S.W. Arnold Streetz$Portlandz$Oregon z$USAz$97219z$ (503)246-4522z$elisacw@juno.com~ z #1@z $Femalez $Rightz $ Parry-Rombergz $ z$PFHAz$ Skin Changesz$skin changes in the form of lost tissue. Denise had braces at the age of 11 or 12 or 13 and at that time I noticed her smile was different.z$I thought it was the braces. It turned out she had lost some fatty tissue in her cheek area adjacent to her nose. A tad of discoloration soon followed.z+&@+(@!z+?{ DzDzz% z$Leftz$Lowerz% z$ z$z% z$ z$z% z$ z $z!$Brownz"$Brown z#$z$% z%$z&% z'#z(# z)$z*% z+$Arm z,$Both z-$8 z.$ z/#z0%z1% z2#z3# z4$ z5$ z6*z7%z8%z9%z:% z;&z<%!z=$left - only occasionally z>$z?% z@$ zA$zB%zC$upper lip skin is thinzD% zE$zF%UzG$Lnear-sighted - due to family history of this or Parry Romberg? We don't know zH$zI% zJ$;zK$2Headaches - not really migraines. Pretty regularly zL$ zM&zN%zO%zP%zQ%pzR$gBlood tests. The Mayo Clinic in Minnesota had theories of connection with thyroid issues in the family. zS$zT%zU%zV%zW%$zX&Surgery just on Oct 25 2001zY%LzZ$CBut we have relatives with graves disease and on thyroid medicationz[% z\$z]%z^$thyroid - see abovez_%Gz`$>Not sure if it is relevant - at age 10 months she fell oin he\ za$zb%zc% zd$ze% zf$ zg& zh& zi& zj$zk%zl%zm% zn$zo% zp$zq%~ {#^@{$Amanda Bolinger{$257 Edgewood Lane{$ West Bend{$ Wisconsin {$USA{$53095{$(262)-335-2098{$mandbolin@hotmail.com~ { #7@{ $Female{ $Right{ $ Parry-Romberg{ $ {$PFHA{$ Skin Changes {$ {${+@+"@!{+@| D{D{{% {$Left {$Both{% {$ {${% {$ {${% {$ { ${!$Brown{"$Brown {#${$% {%${&% {'#{(# {)${*% {+$ {,$ {-$ {.$ {/#{0%{1% {2#{3# {4$ {5$ {6*{7%{8%{9%{:% {;&{<%@{=$7On the left side. The doctors never called it anything. {>${?%{@$I have braces on for the second time. My teeth keep shifting toward the affected side of my face. The doctors think that if I have my jaw fixed and have permant retainers my teeth will be straight. {A${B%@{C$7My left side of my lips is smaller than the right side.{D%9{E$0My left eyebrow doen't move as much as the right{F%_{G$VMy left gets watery a lot because of my tear duct and because I have no lower eye lid. {H${I%S{J$JThe line on my tongue is not in the middle it's more off to the left side. {K$ {L$ {M&{N%{O%{P%{Q% {R$ {S${T%{U%{V%{W% {X&{Y% {Z${[% {\${]% {^${_% {`$ {a${b%{c% {d${e% {f$ {g& {h& {i& {j${k%{l%{m% {n${o% {p${q%~ |#^@|$ Kristi Davis|$ 105 Evcar Way|$ Rio Linda|$ California |$USA|$95673|$ 9169926036|$ckdavis@excite.com~ | #?@| $Female| $Right | $PFHA| $ |$|$ Skin Changes7|$.I started with dark spots on my neck and face. |$|+3@+=@!|+$@} D|D||% |$Left |$Both|% |$ |$|% |$ |$|% |$ | $|!$Brown|"$Brown |#$|$% |%$|&% |'#|(# |)$|*% |+$ |,$ |-$ |.$ |/#|0%|1%~ |2#"@!|33$3 D|2D| |4$ |5$Both~ |6*@|7%|8%|9%|:%|;&When I get migraines, they begin with a floating light that I see in peripheral view. Then my head starts aching so badly that it makes me sick to my stomach and won't go away until I sleep for several hours, which is difficult because the pain is so seve|<%P|=$GI get sharp pains that shoot through the left side of my face and head. |>$|?%y|@$pAll of my teeth on the left side of my mouth have been effected. The roots and nerves are pretty much dissolving |A$|B%D|C$;My lips, both top and bottom, are thinner on the left side.|D% |E$|F%A|G$8My sight is a little worse in my left eye than my right. |H$|I%w|J$nMy tongue looks strange. The line in the middle is moved to the left side because the left side has atrophied.|K${I get severe sharp pains in my left ear and down my neck every great while. They usually last 30 seconds to a minute or so. |L$ |M&|N%|O%|P%|Q% |R$ |S$|T%|U%|V%|W% |X&|Y% |Z$|[% |\$|]% |^$|_% |`$ |a$|b%|c4INJURY WITH BRUSING|d$Just a month or so before I noticed the darkening on my face and neck, I had been hit extremely hard several times on the left side of my face. I always thought it was just coincidence. Lyme|e% |f$|g&I have had five surgeries since November of last year. My last was in August. I had a new type of implant put in my chin and cheek. The one in my cheek wouldn't take and the one in my chin was much too large and looked awkward. I would love to have a surg |h&|i&I am extremely glad that someone is willing to actually research this disease. I have talked to several doctors who know absolutely NOTHING about this syndrome and are not interested at all in finding anything out. Thank you for your support. |j$|k%|l%|m% |n$|o% |p$|q%~ }#_@}$ Janet Taylor}$12710 Golf Club Drive}$Savannah}$Georgia }$USA}$31419}$ (912)925-7098}$skeetersma@aol.com~ } #E@} $Female} $Right } $PFHA} $ }$}$ Eye problems }$ }$}+4@+<@!}+ @ D}D}}%}$Right}$Lower}% }$ }$}% }$ }$}% }$ } $}!$Brown}"$Brown }#$}$% }%$}&% }'#}(# })$}*% }+$ },$ }-$ }.$ }/#}0%}1% }2#}3# }4$ }5$ }6*}7%}8%}9%}:% };&}<% }=$ }>$}?% }@$ }A$}B%"}C$athropy on the right side}D% }E$}F%(}G$double vision, caused strabimus }H$}I% }J$}K$The right side of my neck is very atrophied. My right eye was pulled upward. I have had muscle surgery on both it and the left eye. I am having some fat transfers done.}L$|I have had one so far, it corrected the right temple and added volume to my cheek. I will have another surgery in the spring }M&}N%}O%}P%}Q% }R$ }S$}T%}U%}V%}W%F}X&=I have had two strabimus surgeries and one fat transfer done.}Y% }Z$}[% }\$}]% }^$}_%c}`$ZI did get hit in the head with a baseball bat when I was arount 11. Had a slight concusion }a$}b%}c% }d$}e% }f$ }g& }h& }i& }j$}k%}l%}m% }n$}o% }p$}q%~ ~#_@~$Bonnie F. Keenum~$4165 Cook Springs Road~$ Pell City~$Alabama ~$USA~$35125~$ 205-338-0533~$Bfkeenum@aol.com~ ~ #P@~ $Female~ $Right~ $Romberg~ $ ~$~$ Skin Changes1~$(Face - one side, ear and eye deteriation ~$~ ~+>@ ~+~+~% ~$Left~$Lower~% ~$ ~$~% ~$ ~$~% ~$ ~ $~!$Brown~"$Brown ~#$~$%U~%$LOne small of white hair long before the normal gray hair as a result of age.~&% ~'#~(# ~)$~*% ~+$ ~,$ ~-$ ~.$ ~/#~0%~1% ~2#~3# ~4$ ~5$Left~ ~6*@~7%~8%~9%~:% ~;&~<%~=$Years of reconstructive surgery have left nerve endings "out of place" and I have daily pain, sometimes mild and some days not so mild. ~>$~?%C~@$:Seveal teeth were removed during various stages of surgery ~A$~B%I~C$@Left side of my lips are slightly drawn downward as in a stroke.~D% ~E$~F%q~G$hI was told the Rombergs has destroyed parts of soft tissue and has left the eye fifty percent destroyed. ~H$~I% ~J$ ~K$ ~L$ ~M&~N%~O%~P%~Q%~R$University Hospital at Birmingham, Alabama did tests for @2 weeks and I have no idea what some of them were. Like testing nerve damage by inserting needles in my face. ~S$~T%~U%~V%~W% ~X&~Y% ~Z$~[% ~\$~]% ~^$~_% ~`$ ~a$~b%~c% ~d$~e% ~f$~g&In early stages of treatment I was given numerous silicone injections while Doctors were looking for "solutions". Later, during a lenghty procedure the silicone was to be removed and the amount removed was much less than the recorded amount previously inj~h&At the time I was diagnosed I was told the only medical records available at that time was all children. At that time I was the only adult they were aware of undergoing treatment. Prior to age 30 I had no problems related to Rombergs. I have three beautif ~i& ~j$~k%~l%~m% ~n$~o% ~p$~q%~ #`@$ Jacob McGowan$3033 Webber Hill Road$ Trafalgar$Indiana $USA$46181$ 812-597-0193"$rlcrobin@reliable-net.net~  #@  $Male $Right $ Parry-Romberg $ $$ Skin Changes$Depression in right top side of skull after trauma to right forehead. Hair changed from blond to white then fell out. Half of eyelashes in right eye fell out. $+@+@!+? DD%$Right$Upper% $ $% $ $% $  $!$Brown"$Brown #$$%R%$IPatch of hair over "coup de sabre" turned blond then white then fell out.&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6*7%8%9%:% ;&<% =$ >$?% @$ A$B% C$D%.E$%depression in center of right eyebrowF% G$ H$I% J$K$Complains of itching in right eye. Always rubbing eye. Occassionaly complains of headache but not severe enough to suspect migraine. Comments on itching sensation at the "coup de sabre" mark. L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_%`$5 yrs old fell off oak stool, stool fell and hit forehead, momentarily lost consciousness and wet his pants. No other problems found. a$b%c4INJURY WITH BRUSING(d$Injury to head by falling stoole% f$ g& h&i&I have completed this form on behalf of my grandson who was diagnosed 5 days ago. Hope to hear back very soon on any results from the survey. He does have bone involvment. Will send photo. Robin Clark j$k%l%m% n$o% p$q%D](l x" ,"\8 F [  m 0$ 4 <q4 HR ' vT0@v@v@v@v@v@v@v@v@v,@$v,@v,$@v,@$v,@v,$@v,@v,$@v,@v,@v,@v,@Gv,@v,@v@vw@v@v@v@Gv@v@Gv@v@~ # `@$no name please $$lorain $Ohio $USA $4405 $ $~ #G@ $Female $Right (En coup de sabre $ $$ Skin Changes $ $+6@+8@!+@ DD%$Right $Both% $ $% $ $% $ $!$Other"$Other #$Grey$% %$&%~ '#9@!(#@( D'D&)$ideopathic grand mal siezures*% +$ ,$ -$8R.$I400mg 4x daily at present I am not taking any. Although I probably should~ /#C@0%1% 2#3#%4$no doctor has described them5$Right~ 6*@7%8%9%:%S;&Jjust very intense pain in front of head and also in back of low scalp area<% =$ >$?% @$ A$B%AC$8thinning on right side with a slight droop to this area.D%8E$/hair loss, tissue loss, skin shiny and scarred.F% G$ H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W%X&When I was first diagnosed with scleroderma the cleveland clinic put me on d penicillamine, but I was losing bone marrow after the first few days and had to stop taking it. I have been on nothing since.Y% Z$[% \$]% ^$_%/`$&only for the pain from the scleroderma a$b%c4INJURY WITH BRUSINGd$Yes. when I first noticed pain and darkness in this area I had been hit on the forehead by a hard toy that my son had wielded at me while I was laying on the couch.e% f$g&my first diagnosis was trigemenial something I can't recall exactly what at this time. I sought help for pain- with early symptoms of discoloration , tissue loss and hair loss was pain in the fifth cranial nerve area. I was given a block to this area, wheh&when I had the MRI the technician asked if I had a steel plate in my head, Or if I was ever kicked by a horse or had any other head trauma. He later showed me what he saw on the picture. I showed him the lesion and he was astounded. He had never heard of i&Yes. when I first noticed pain and darkness in this area I had been hit on the forehead by a hard toy that my son had wielded at me while I was laying on the couch. I never had any symptoms before this. Although I have been told that this is probably pure j$k%l%m% n$o% p$q% rs~ #``@$Sherree Wakefield$25315 old carriage ln$spring$Texas $USA$77373$ 281-355-5240$firehotsw23@yahoo.com~ #7@ $Female $Right $ Parry-Romberg $ $PFHA$ Skin Changes$Skin changes in face and on my back it lookes wite and brown it covers a big part of my back. left side of face is out of alinment with the right. skin is deteriated, no fat and hardly any mucle. Grang mother has this also. $+@+7@!+/@ DD% $Left $Both% $ $%$Right $% $ $!$Brown"$Brown #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1%~ 2# @!33?3 D2D 4$ 5$Both~ 6* @7%8%9%:%%;&happened at time of accident<% =$ >$?%@$my teeth are un even on side of my mouth is smaller than the other and my mollers don't touch together like they should. my bite is uneeven. even after 4 years of brasses. A$B%2C$)tope and bottom left lips are very small.D%*E$!one side is lower than the other.F%CG$:i have to where glasses. one side is worse then the other. H$I%-J$$left side slitly smaller than other.rK$iAfter i got this I had learning problems. i halso had to sart wheiring glasses, amd my teeth got crucked. L$ M&N%O%P%Q% R$ S$T%U%V%W%LX&Cabout to have reconstructive surgery. Houston texas Mamorial HurmanY%Z$my grandmother[%\$ my brother]% ^$_%`$my jaw a$b%c4INJURY WITH BRUSING;d$2a swimming accident involving my jaw at age 7 or 8e% f$g&i was perfecly normal when i was born. I was involed in a swimming accident when i was 7 0r 8 years old involving my jaw, it left my face blue looking for one year, i had sivier head ackes after it happened latter my familey noticed that my left side of m h&i&the only comment i want to make is i am willing to become a lab rate to stop this disease. i am willing to talk to people and have my case researched. MY # 281-355-5240. j$k%l%m% n$o% p$q% rs~ #a@$Shandra Hubbard$7067 APPLECREEK COVE$MEMPHIS $TN $USA$38125$ 901-759-0021$hope41171@yahoo.com~ #>@ $Female $Right $PFHA $$$ Skin Changes $ $+4@+>@!+$@ DD% $Left $% $ $% $ $% $ $!$Brown"$Brown #$$% %$&% '#(# )$*% +$Both ,$Both -$4 .$ /#0%1%~ 2#4@!333 D2DD4$;USUALLY STARTS ON LEFT SIDE AROUND MY TEMPLE OR OVER LT EYE 5$Left~ 6*@7%8%9%:% ;&<% =$ >$?%(@$TEETH AREN'T ALLIGNED ANY MORE. A$B%BC$9LEFT LIP IS PULLED UPWARDS FROM THE TIGHTENING OF MY SKIND% E$F%G$EYESIGHT IS POOR H$I% J$"K$EYE RUNS WATER FREQUENTLY L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]%'^$AUTOIMMUNE HEPATITIS, ITP, DJD_% `$ a$b%c% d$e% f$ g& h& i& j$k%l%m% n$o% p$q% rs~ #a@$Kelly Silliman$2901 SW 41st Apt 905$Ocala$Florida $USA$34474$ 352-237-7335$Silli1269@aol.com~ #?@ $Female $Right $ Parry-Romberg $ $$ Skin Changes $ $++9@!+9@ DD%$Right$Lower% $ $% $ $% $ $!$Hazel"$Hazel #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6*7%8%9%:% ;&<%=$Hmmm I do onot know what trigeminal neuralgia is, but I do get pain in my face. One of the doctors I have seen said it was just nerve damage from the surgerys. Teeth >$?% @$ A$B%sC$jReally not sure if its my condition or it just is! My right top lip isnt the same as the left its smaller.D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q%R$vThe first year I had eye tests, blood tests, MRI, brain tests..I think I saw every kinda of different doctor there is. S$T%U%V%W% X&Y% Z$[% \$]%o^$fMy mother has hasmotos ( Thyroid ) and ruematoid arthritis my grandmother and great G have/had Ra too._% `$ a$b%c%STRESS1d$(Stress of planning my wedding ( I think)e% f$g&I was born with what they had thought was a birth defect, where my right side of my face just didn't quite finish developing. ( so I was told). When I was 25 I noticed my "dent" getting worse. I actually went to a dermatoligist about my hands, because theh&Well I haven't been able to find any connection with Parry romberg and this but here goes. I have been seeing doctors for the pass year. Unexplained nausea...bad nausea that wakes me in the night..that comes and goes sometimes days or weeks non stop and tmi&dThink I just about covered everything, and then some! Thanks again! I hope I helped you in some way. j$k%l%m% n$o% p$q% rs~ #a@$ Heidi Febles $3160 Stratford Green Pl$Avondale Estates$Georgia $USA$30002$ 404.713.3560"$Heidi.Febles@cingular.com~ #A@ $Female $Right $ Parry-Romberg $ $$ Skin Changes $ $+1@+7@!+@ DD%$Right$Lower% $ $% $ $% $ $!$Brown"$Brown #$$% %$&%~ '#4@!(#@( D'D)$My doctors never diagnosed why I had seizures. I didn't know until I started reading that it might be related to Rombergs. I have not had one in a very long time.*% +$ ,$ -$ .$~ /#4@0%1%~ 2#@@!33-@3 D2DE4$<constant pain starting at the base of my neck up to my eyes. 5$Both~ 6*@7%8%9%:% ;&<% =$ >$?%@$i'm not 100% sure but the reason I have started researching again is because my dentist is asking me about the disease. He couldn't find anything on it. He feels like my alignment is off. A$B%DC$;my lips kind of go crooked on the side of my deterioration.D% E$F% G$ H$I% J$iK$`My face twinged every once in a while and I never thought about it until I started reading info. L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c%4d$+headaches and the discoloration of my chin.e% f$ g& h& i& j$k%l%m% n$o% p$q% rs~ #a@$ Amy Bennett$7914 Pine Island Ct$Belmont$Michigan $USA$49306$ 616-887-1629$abennett@otterbase.com~ #@@ $Female $Right (En coup de sabre $ $$ Skin Changes $ $+6@+@@!+$@ DD%$Right $Both% $ $% $ $% $ $!$Brown"$Brown #$$% %$&%~ '#?@!(#"@( D'DN)$E2 gand-mal and now semi-partial while on the anti-seizure medications*% +$Arm ,$Left -$1r.$i3 different... I have been try many different kinds and none are working to stop the seizures completely. /#0%1% 2#3# 4$ 5$ 6*7%8%9%:% ;&<% =$ >$?%@$jitter A$B%C$twitchD%E$twitchF%OG$Fcan't handle bright light and my vision jumps and it is hard to focus. H$I% J$K$Left-side has become weak over the past 6 months or so. My left hand grip is 20 lbs less then the right. Left hand index finger is gone numb and parts of my hand will also but unlike my finger it will come backL$zMy seizures are always on my left side. My face twitches on my left side but I have lost fat in my face on the right side. M&N%O%P%Q%KR$Bangiogram of the brain where dye is shot to highlight the vessels. S$T%U%V%W%HX&?IVIG - Immino Globine This treatment I am currently undergoing.Y% Z$[% \$]% ^$_% `$ a$b%c% d$e% f$g&I was diagnosed my a team of doctors at the Cleveland Clinic Foundation in Cleveland, Ohio USA. I have given your website and report to them. Your patient sound a lot like what I have been going through. I started having Hemifacial switching since October h&|i&splease do not release my name or give an personal information without my permissions. Thanks for all your research. j$k%l%m% n$o% p$q% rs~ # b@ $Sara $ $ $ $USA $ $$chrys@athenet.net~ #9@ $Female $Right $ Parry-Romberg $ $$ Skin Changes $ $+1@+1@!+ DD%$Right$Lower% $ $% $ $% $ $ !$Blue "$Blue #$$% %$&% '#(# )$*% +$Both ,$Both -$8 .$~ /#5@0%1%~ 2#0@!333 D2D 4$5$Right~ 6*@7%8%9%:% ;&<% =$ >$?% @$ A$B% C$D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c%DRUGS#d$acne medication - accutanee% f$ g& h& i& j$k%l%m% n$o% p$q% rs~ #b@$Bryan McDowell$6715 Crimson King Ct.$ Indianapolis$Indiana $USA$46256$ 317 577 8210$cmacmom@home.com~ #5@ $Male $Right (En coup de sabre $$Morphoea$ Skin Changes $ $+ @+5@!+*@ DD%$Right$Upper% $ $% $ $% $ $!$Brown"$Brown #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6+7%8%9%:% ;&<% =$ >$?% @$ A$B% C$D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_%`$~At age 8 a white line appeared down the middle of my forehead. We thought it was from being hit by a large stone a year before a$b%c% d$e% f$g&An indentation on right on chin which causes the lip to drop slightly. Also a dent in jaw bone on right side. Forehead had indentation which also showed up as a slight valley in skull in CAT taken at age of 15. Forehead has continued depression from betweh&Doctors have decided to look at CAT taken 6 years ago. The only other measure being taken at this time is UVA therapy 3 times a week. The doctors seem to be leaving it up to us to find new research for treatment. They have diagnosed this as linear scerode i& j$k%l%m% n$o% p$q% rs~ #b@$ Alisa Sisk!$3621 Lebanon Church Road$ Gillsville$Georgia $USA$30543$ 770-535-0054$AlisaSisk@webtv.net~ #C@ $Female $Right )linear scleroderma $(En coup de sabre$ Skin Changes $ $+*@+A@!+6@ DD% $Left$Upper% $ $% $ $% $ $!$Brown"$Brown #$$%q%$hI developed a gray streak on the right side in my mid 20's - no other gray hair was present at the time.&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6+7%8%9%:% ;&<% =$ >$?% @$ A$B% C$D% E$F%|G$sI am far-sighted. The vision in my left eye has worsened over the past two years. My right eye used to be my worst. H$I% J$K$I have had increased joint pain in the past year. Anti-inflammatory meds seem to help. My skin is extremely dry - my hands look very old. I have acne roseacea and wonder if it is related. L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c%md$dI lost my hair on my crown (about the size of a quarter) prior to developing depression of the area.e% f$ g& h& i& j$k%l%m% n$o% p$q% rs~ 9b@:Lauralee Pasko : : : $USA : ::bpll@bellsouth.net~ 9@@ :Female :Right (En coup de sabreD :;hemifacial atrophy, en coup de sabre, localized scleroderma: Skin Changes:chronic Illiotibial Band Syndrome which could not be explained; en coup de sabre, nose and right side of face are slightly sunken:~ ;(@ :32!+4@ DD9:Right :Both9 : :9:Right :9:Right :Both!:Brown":Brown #:$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919~ 29*@!33?3 D2D4:I don't know if I have migraines. I have headaches very often - sometimes so bad that I cannot concentrate on anything. I have never become nauseated though, but I have had difficulty looking at bright lights. 5:Both~ 6;@798999:9 ;:<9 =: >:?9 @: A:B9 C:D9 E:F9wG:nI've had glasses/contacts since I was 6 years old. I'm not sure of my eyesight, but I think I'm legally blind. H:I9 J: K: L:M9N%O9P9Q9 R: S:T9U9V9W9 X:Y9 Z:[9 \:]9A^:8aunt - fibromyalgia; sister - Raynaud's, osteo-arthritis_9T`:KI was in a car accident at age 16, and hit the headrest with my left cheek. a:b9c%STRESSJd:AI honestly think severe stress is what has triggered my problems.e9 f:g:I have pain and stiffness if I do not stay active. I developed Illiotibial Band Syndrome a year ago from running and have been in physical therapy for a year trying to figure out why it won't go away. My rheumatologist told me the muscles and tendons in mh:I'm glad someone is researching this rare disease. My friends, family and co-workers can't believe I have some rare disease. My problems have been blamed on stress, but since I started researching scleroderma and Parry-Romberg, I think I've finally found  i: j:k9l9m9 n:o9p9q9r9s9~ 9c@:Annabelle Wood: 45 Hotham Ave: Boddington :WA: Australia :6390: 08 9883 8079 :dlclwaller@yahoo.com.au~ 9 @ :Female :Left :PFHA : Lipoatrophy: Skin Changes : :; :+9 :Left :Both9 :Left :9 :Left :9 :Left :Both!:Hazel":Hazel #:$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919 293: 4: 5:Left~ 6;@798999:9 ;:<9 =: >:?98@:/Adult teeth are not straight. Some are sideways A:B9 C:D9&E:Very little hair, almost noneF9G:Blin in the right eye H:I9 J: K: L:M9N9O9P9Q9 R: S:T9U9V9W9 X:Y9 Z:[9 \:]9 ^:_9 `: a:b9c d:e9 f: g: h: i: j:k9l9m9 n:o9p9q9r9s9~ 9 c@: Sandra Lehman:21 Rutledge Avenue: Bartonville:Illinois :USA:61607:(309) 697-3012:Purzns1@aol.com~ 9G@ :Female :Right FEn coup de sabre :: Skin ChangesW:Na circular patch of missing hair and then deep groove started down my forehead:;E@;F@!+? DD9:Right:Upper9 : :9 : :9 : :!:Brown":Brown #:$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919~ 29F@!33?3 D2D 4:5:Right~ 6;@798999:9 ;:<9 =: >:?9 @: A:B9 C:D9 E:F9 G: H:I9 J: K: L:M9N9O9P9Q9pR:gdovonex cream for 2 years didn't help PUVA treatments for 4 months didn't help Plaquenil for 1 week now S:T9U9V9W9 X:Y9 Z:[9 \:]9 ^:_9 `: a:b9c d:e9 f: g: h: i: j:k9l9m9 n:o9p9q9r9s9~ 9@c@: Gokhan Ceylan=:4Fatih Mahallesi Meltem Sok. B1 Blok D:9 Kucukcekmece:Istanbul ::Turkey:34650: 0212 5807702:ceylan_hakan@yahoo.com~ 96@ :Male :Right : Parry-Romberg :: Skin Changes ::;2@;5@!+@ DD9:Right :Both9 : :9 : :9 : :!:Brown":Brown #:$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919 293: 4: 5: 6;798999:9 ;:<9 =: >:?9 @: A:B9 C:D9$E:Hair loss on right eyebrowsF9 G: H:I9 J: K: L:M9N9O9P9Q9 R: S:T9U9V9W9X:Actually I don't know that what kind of tablets I am using. I am writing the prescription. . Flamtadin . Contra ctu bex . Gastrosidin This is the only treatment the doctors have suggested although they agreed on that these tablets and creams can't treat tY9 Z:[9 \:]9 ^:_9`: fell on chin. a:b9c%STRESSd:stresse9 f:g:First of all, I would like to thank you for your informative website and help. I want to explain my situation. I am from Turkey. I realized that I have an illness four years ago. First symptoms were hair loss on my head. Then a skin part on my right side  h: i: j:k9l9m9 n:o9p9q9r9s9~ 9`c@:Henrik Thrling:Dr Forselius Backe 9: Gothenburg ::Sweden:S-413 26: +446031411488:henthor@hotmail.com~ 9;@ :Male :Right :Romberg FEn coup de sabre: Skin Changes ::;+@;0@!+@ DD9 :Left:Upper9 : :9 : :9 : :!:Hazel":Hazel #:$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919 293: 4: 5: 6;798999:9 ;:<9=:Have never heard that word, doctors haven't given me a name for it. It's not a unbearable sort of pain, it's an ongoing "sensation" like a low noise (if that makes any sense). It's exclusively concentrated to the left side of my forehead and skull. >:?9 @: A:B9 C:D9E:Have lost nearly all of left eyebrow. This have progressed gradually in my 20s. What remains is a few number of hairs (nearest to my left ear so to speak).F9G:Hard to say, I began wearing glasses at 22. My eyesight is worse on my left eye compared to the right. But I don't have major problems with sight. H:I9 J: K: L:M9N9O9P9Q9 R: S:T9U9V9W9 X:Y9 Z:[9 \:]9 ^:_9 `: a:b9c d:e9 f:g:It's important that my name won't be used... aside from that you have my permission to use whatever I state in this survey. If there are any further questions you might have concerning my condition, please send me a mail. h: i: j:k9l9m9 n:o9p9q9r9s9~ 9c@: Amlie Lozeau:2436 Coleraine:Montral:Qubec:Canada:H3K 1S4: 514-933-0962!:amelielozeau@hotmail.com~ 96@ :Female :Left :Romberg :: Skin ChangesF:=Loss of a little spot of hair, eyebrow (alopecia) and eyelash:;@;,@!+"@ DD9:Right :Both9 : :9 : :9 : :!:Green":Green #:$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919 293: 4: 5: 6;798999:9 ;:<9 =: >:?9 @: A:B9 C:D9+E:"Loss of the right eyebrows at 5 yoF9 G: H:I9 J: K: L:M9N9O9P9Q9 R: S:T9U9V9W9X:I had fixation of silicone on my forehead, molded to the appropriate shape, 6 years ago: a success for me I had realignment of both jaws (the surgeon fractured both jaws, realign them and immobilized them for 3 weeks)Y9 Z:[9 \:]9 ^:_9 `: a:b9c d:e9 f: g: h: i: j:k9l9m9 n:o9p9q9r9s9~ 9c@:Maria Battaglia: P.O Box 317: Misenheimer:North Carolina :USA:28109:(704)-463-1360:mpb@pfeiffer.edu~ 94@ :Female :Right : Parry-Romberg :: Eye problemsw:nA large surface vien appeared on my forehead, and I had very poor eyesight in my right and perfect in my left.:;@;@!+@ DD9:Right :Both9 : :9 : :9 : :!:Hazel":Hazel #:$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919~ 290@!33*@3 D2DV4:MThrobbing pain on right side of my head, but doctors have not described them.5:Right~ 6;@798999:9 ;:<9^=:UI always thought it was due to the Parry Rhombergs so I haven't seen a doctor for it. >:?9@:I have braces now, I had to wait til I was 18 to get them because they thought they might have to break my jaw, but they didn't. A:B9.C:%It's a little thin on the right side.D9 E:F9,G:#20/100 in right eye, 20/13 in left. H:I9)J: Atrophy to right side of tounge. K: L:M9N9O9P9Q9R:yI had a lot of testing when I was young, but I don't remember the speciic ones. I know it wasn't any of the one's listed. S:T9U9V9W9 X:Y9 Z:[9 \:]9 ^:_9 `: a:b9c d:e9 f: g: h: i: j:k9l9m9 n:o9p9q9r9s9~ 9c@:C. Moody : : :MS :USA:38901 ::moody5@network-one.com~ 9 @ :Male :Left :Romberg :PFHA: Skin Changes ::;@;@!+? DD9:Right :9 : :9 : :9 : :!:Other":Other#: camouflage$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919 293: 4: 5: 6;798999:9 ;:<9 =: >:?9 @: A:B9AC:8blue tint to that side of lip--looks like hit in the lipD9 E:F9 G: H:I9 J: K: L:M9N9O9P9Q9#R:all tests have been normal S:T9U9V9W9 X:Y9 Z:[9 \:]9 ^:_9 `: a:b9c d:e9 f:g:yI have been told that there is no treatment for this disorder. We have been watching it for 4 years with gradual atrophy. h: i: j:k9l9m9 n:o9p9q9r9s9 tu~ 9d@:Amy Michelle Becker:3261 Paprika Court: Cincinnat :OH :USA:45251: 513-674-7827:ambecker@cinci.rr.com~ 9=@ :Female :Right )linear scleroderma :: Skin Changes ::;@;$@!+@ DD9 :Left:Upper9 : :9 : :9 : : !:Blue ":Blue #:$9 %:&9~ '9(@!(#@( D'D)9*9 +: ,: -:8 .:0~ /9.@0919 293: 4: 5: 6;798999:9 ;:<9 =: >:?9 @: A:B9 C:D94E:+I have very little hair in my left eyebrow.F9 G: H:I9 J: K: L:M9N9O9P9Q9 R: S:T9U9V9W9 X:Y9 Z:[9 \:]9 ^:_9 `: a:b9c d:e9 f: g: h: i: j:k9l9m9 n:o9p9q9r9s9 tu~ 9 d@:Catherine Parramore=:438 harrier park, east hunsbury, northampton, NN4 0AG: Northampton : :UK :: 01604 702305 :~ 9D@ :Female :Right FEn coup de sabre :morphoea: Skin Changes ::;:@;:@!+ DD9:Right :Both9 : :9 : :9 : : !:Blue ":Blue #:$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919 293: 4:5:Right~ 6;@798999:9;:severe ache around the right eye and cheek - this is the side of the face that is affected by the scleroderma. Apart from forehead involvement the right side of my face is atrophied. I came across Parry Rombergs by accident and think it fits my symptoms. <9)=: Right side - as described above. >:?9@:Bone loss on root of front teeth and some loss of gum tissue. Damage occurred during last pregnancy -dentist is unsure whether pregnancy of scleroderma is to blame. A:B9 C:D9 E:F9 G: H:I9 J: K: L:M9N9O9P9Q9 R: S:T9U9V9W93X:*biopsy of scar tissue to confirm diagnosisY9 Z:[9\: maternal aunt]9^:mother is getting progressively more and more disabled with a neurological condition that doctors have been unable to diagnose. She has had it for at least ten years and it has the appearance of motor neurone and multiple sclerosis._9 `: a:b9c% PREGNANCYd:Possibly first pregnancy. First noticed symptoms when baby was 6 months old. I have four children and there seems to be a pattern of remission and then flare ups during and after the births.e9 f:g:I have seen a number of consultants as I have moved to different areas. I no longer see the consultant at my local hospital as he gives the impression of being totally disinterested in my case. This is a very lonely disease and it is sometimes painful to  h: i: j:k9l9m9 n:o9p9q9r9s9 tu~ 9@d@:Deborah D. Fambry:1329 Cathy Way:amelia :ohio :USA:45102: 513-943-1722:fambryd@hotmail.com~ 9@@ :Female :Right : Parry-Romberg : : ::~ ;&@ ;+9:Right :9 : :9:Right :9 : : !:Blue ":Blue #:$9.%:%hair on right side temple line silver&9~ '9@!(#( D'D)9*9 +:Arm,:Right -: .:~ /9@0919~ 29@!333 D2D,4:#like a stabbing pain behind rt. eye5:Right~ 6;@798999:9;:black outs where i quite breathing , and had seizuer type activity ,this was between ages 3-5, then between ages 5-7 sever headachs behind right eye that became almost a weekly occorence , more sever each time. ,at age 7 right eye lid ,browl,lashes, and t<9 =: >:?9@:????? A:B9 C:D9E:right one is silverF9G:vision in rt is worse H:I9 J:K:In mid 20's had headach so sever required hospital er care and CT was done. developed hair loss in one spot on right side, joint swelling, abnormal LFT, Cronic fatigue,shortly after this episode L:M9N9O9P9Q9ER:<eeg as a child ,ct as a child and then as a adultct was done S:T9U9V9W9 X:Y9 Z:[9 \:]9 ^:_9?`:6as a teen ager 13 feel off hourse and got a concussion a:b9c d:e9\f:S?????was never tested but had to have a tick surgicaly removed?? aprox age 3-5yearsg:During teen age years I would have urges to throw myself to the floor and jerk around , In mid 20's had headach so sever required hospital er care and CT was done. developed hair loss in one spot on right side, joint swelling, abnormal LFT, Cronic fatigueh:struggled in school, had to study very hard to just make c, trouble with consentration, I would learn something then not know it the next day.wi:nI have worked in the medical feild now for 13 years as a medical assistant , and have yet to get a correct DX: j:k9l9m9 n:o9p9q9r9s9 tu~ 9`d@:Monica M. Seiberling:207 East School Street:Thorp: Wisconsin :USA:54771:(715) 669-7629!:seibers@discover-net.net~ 9:@ :Female :Right : Parry-Romberg ::Epilepsy:I started having episodes where my right arm would go numb (starting at my finger tips travelling up my arm) and then the right side of my face would go numb.:;(@;.@!+@ DD9 :Left:Upper9 : :9 : :9 : : !:Blue ":Blue #:$9 %:&9~ '9(@!(#( D'Dp):gAs mentioned previously, I would experience parathesias on the right arm and the right side of my face.*9 +:Arm,:Right -:8S.:JTegretol XR 400mg 2x/day (I recently discontinued this med after 10 years)~ /93@0919~ 29(@!333 D2D*4:!flashing in my eyes, bad headache 5:Left~ 6; @798999:9 ;:<9 =: >:?9 @: A:B9 C:D9 E:F9 G: H:I9 J: K: L:M9N9O9P9Q9R: Angiogram'S:Tegretol; propranolol; aspirinT9U9V9W9 X:Y9 Z:[9 \:]9 ^:_9 `: a:b9c d:e9 f:g:MRI and CT findings consistent with "lacunar type infarctions of the left thalamus, anterior limb of the left internal capsule, anterior portion of the left external capsule, and gray/white junction of the left frontoparietal region." I was immediately pu h: i: j:k9l9m9 n:o9p9q9r9s9 tu~ 9d@: Ellen Foley ::Milford :Ohio :USA : ::pandadog@fuse.net~ 9C@ :Female :Right : Parry-Romberg :PFHA: Skin Changes ::;@@;A@!+@ DD9:Right:Lower9 : :9 : :9 : :!:Hazel":Hazel #:$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919 293: 4: 5: 6;798999:9 ;:<9 =: >:?9 @: A:B9 C:D9 E:F9 G: H:I9 J: K: L:M9N9O9P9Q9 R: S:T9U9V9W9 X:Y9 Z:[9 \:]9 ^:_9 `: a:b9c%STRESSd:How about stress?!e9 f:g:I know that I am an unusual case as I developed P-R's later in life than what I think is typical. It developed very slowly and it took about 4 years to be completed (if it is). I have only fat loss on the right side of my face, no muscle or bone loss, so  h: i: j:k9l9m9 n:o9p9q9r9s9 tu~ 9d@: Shannon Bird:13125 Candiada Rd.: prince George ::Canada :: 1250-964-3810$:perfect_littl52@hotmail.com~ 9(@ :Female :Right : Parry-Romberg :: Skin Changes ::;@;@!+? DD9:Right :Both9 : :9 : :9 : :!:Green":Green #:$9 %:&9 '9 (:)9*9 +: ,: -: .: /90919~ 29&@!33 @3 D2Dn4:eI usually have them when I get stressed or am just felling really hot or cold or when i just blackout 5:Both~ 6;@798999:9 ;:<93=:*on my right side usualy around my forehead >:?9+@:"makes me hae a very wierd overbite A:B9%C:the right side is slanted upD9 E:F9 G: H:I9 J: K: L:M9N9O9P9Q9 R: S:T9U9V9W9X: MethotrexateY9 Z:[9 \:]9 ^:_9 `: a:b9c4INJURY WITH BRUSINGd:I go see the rombergs connection and most peple who have it have been injured in some way like with me I got attacked bytwo dogs just before I started seeing signs of ite9 f:g:I go see the rombergs connection and most peple who have it have been injured in some way like with me I got attacked bytwo dogs just before I started seeing signs of it h: i: j:k9l9m9 n:o9p9q9r9s9 tu~ 5d@6derek tyler albertson65000 audubon lane6concord 6nc :USA62802561-704-262-95276nikki1230@ctc.net~ 5$@ 6Male 6Right 6 Parry-Romberg :PFHA6 Skin Changes6has about a 2 inch gash on right side of head above the hair line and also a bluish red mark on right side of forehead above the eye that comes down to about the nose.6<"@<$@!+? DD56Right6Upper5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5 (6)5 *6 +6 ,6 -6 .5/50515~ 25$@!33?3 D2D46headaches come and go 5:Both~ 6<@758595:5;6feels nauseated<5 =6 >6?5a@6Xnot sure,does have some tooth decay, just diagonosed with parry romberg today march 3rd. A6B5 C6D5 E6F52G6)will be having eyes checked on march 8th. H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5 c6de5f6derek will be seeing a specialist on may 16th who has more experience with parry romberg syndrome.His doctor setup the appointment with the dermatologist because he was concerned with the gash on his head. g6 h6 i6jk5l5m5no5p5q5r5s5t5u~ 5d@6Jamie Wilkinson6 19 Centaurus6Irvine6 California. :USA6926126 (949)854-1537$6jamie.premierrealty@cox.net~ 5L@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes36*The left side of my face began to atrophy.6<3@<5@!+@ DD5 6Left6Lower5 6 65 6 65 6 6!6Green"6Green #6$57%6.Lost pigmentation on left side near the crown.&5 '5 (6)5 *6 +6 ,6 -6 .5/50515 26 36 46 566S758595:5 ;6<5 =6 >6?5V@6MI had to have a bridge made at top left side of mouth due to teeth loosening. A6B5 C6D5PE6GI have had my eyebrows tatooed because of loss of hair on left eyebrow.F57G6.Left eye is weaker than right. I wear glasses. H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5X6 See above.Y5 Z6[5 \6]5:^61I have a brother with a hare lip and cleft palate_5`6 auto accident a6b5 c6de5f6Because of the severity of my problem, I had silicon injections to the left side of my face from approximately 1970 through 1972. Dr. Franklin Ashley of Los Angeles (since deceased) gave the injections to make my face more symetrical. Unfortunately, withi%g6www.newportcoasthomesite.com h6 i6jk5l5m5no5p5q5r5s5t5u~ #`@$ Nestor Chavez7$.av. san juan de dios, terrazas de valle arriba$caracas$ dtto federal$ Venezuela$1080a$9750875$guacuco@cantv.net~ #1@ $Male $Right $Romberg $PFHA$ Skin Changes $++@+"@!+@ DD% $Left$Upper% $ $% $ $% $ $!$Brown"$Brown #$$%%$alopecia&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6+7%8%9%:% ;&<% =$ >$?% @$ A$B%C$left lip atrophyD%E$eyebrows tail alopeciaF% G$ H$I%J K$ L$ M$N%O%P%Q% R$ S$T%U%V%W%X& panoramic r/xY% Z$[% \$]% ^$_% `$ a$b%c% d$e% f$ g&h&I wish your help for my treatment I dont have resources for my treatment Let me know if you can help me If you can send me a bibliographic material about my condition I,ll appreciate send by e mail to guacuco@cantv.net i$jk%l%m%no%p%qu~ 5e@6Robert Cunningham69123 N 44th Avenue6Glendale 6AZ :USA6853026(623) 937-5082-6$robert.d.cunningham@worldnet.att.net~ 5K@ 6Male 6Left 6Romberg :PFHA6 Skin Changes 6<.@<@@!+2@ DD56Right 6Both56Right 656Right 656Right 6 !6Blue "6Blue #6$5%6|Not so much color but I have a large dent on the top of my head and the hair on right side grows very slowly or has stopped.&5~ '5J@!(#C@( D'D)*5 +6Leg,6Right -62 .61 /50515~ 259@!33$@3 D2D 4656Right~ 6<@758595:5;6They are in different places like forehead, behind eye, back of head and down into neck, all on the right side. They can be debilitating; lying down, cold washcloth, pain medication help but sometimes they are really stubborn. Not covered above; I have we<5{=6rAll symptoms are on the right side. I frequently have burning, itching, tight skin in affected area and twitching. >6?5@6{My gums seem to be receding, my teeth and jaw is sensitive to hot food and drink. teeth break and get cavities, one bridge. A6B5[C6RBottom lip halfway between center and corner and upper lip under nose, right side.D55E6,losing hair and some tissue at about center.F5FG6=Right eye twitches often and focusing is difficult sometimes. H6I5)J6 Tongue is thinner on right side. K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5X6I had collagen injections for a few months to improve my appearance but the fluid ran out almost as fast as they put it in....I quit going.Y5 Z6[5 \6]5 ^6_5'`6I was knocked out a few times. a6b5,cu~ 5 e@6 SARAH ZITO627 ORCHID LANE6 NEW HYDE PARK 6NY 6USA6110406 516-489-37766SALEZITO@AOL.COM~ 5J@ 6Female 6Right FEn coup de sabre 66 Skin Changes 6<?<?!+? DD56Right6Upper5 6Both 65 6Both 65 6Left 6Upper!6Brown"6Brown #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515~ 25F@!33@F@3 D2D46yACUTE PAIN SOMETIMES FEELS LIKE A LIGHTENING BOLT. SEEMS TO BE BROUGHT ON BY WEATHER CHANGES, CERTAIN SOUNDS AND FATIGUE.56Right~ 6<@758595:5;6UNABLE TO THINK.<5=6CAN BE ANYWHERE, BUT MANY TIMES IT SEEMS RIGHT SIDED. DOCTOR HAS NOT CALLED IT ANYTHING SPECIFIC BUT GIVES 5X RENEWAL OF 100 TABLETS OF ESGRIC? >6?5 @6 A6B5 C6D5 E6F5G6SORE EYES -- ALWAYS USING MOISTURE DROPS. OPTHALMALOGIST STATES THAT THERE IS A SCAR VERY NEAR THE CORNEA BUT DOES NOT BELIEVE IT IS RELATED TO EN COUP DE SABRE. DOCTOR ALSO SAIDH6THAT RETINAL VESSELS HAVE THE APPEARANCE OF SOMEONE WITH HIGH BLOOD PRESSURE, BUT INTERNIST CHECKS REGULARLY AND I DO NOT HAVE HIGH BLOOD PRESSURE.I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_59`60CONCUSSION FROM AN ASSAULT AT NINE YEARS OF AGE. a6b5c%STRESSd6 Stress, heat,e5 f6g6I have never told anyone except my wife. I'm not sure "seizure" is the correct word but I have brief moments when I see white and feel like my head is being short circuited. I can't move or talk and start to fall over. I would too except they only last a h6I had a surgery in 80's for two herniated disks which left me with partial paralysis in right leg, foot and rear. My right leg is weak and I don't know where to draw the line between the paralysis and the Romberg's. I had a pulmonary edema in Jan. '02 andi6I'm sorry I don't have a picture at this time. Many doctors for many years had no idea what my disease was. I lived for many years thinking I might drip dead at anytime. I have adjusted my lifestyle hundreds of times to see if there was anything I could d j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5@e@6michael klihance6325 beach 57 street6arverne6new york 6USA611692 66meci005@aol.com~ 56@ 6Male 6Right 6Romberg 66 Skin Changes 6<&@<(@!+? DD5 6Left6Lower5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?50@6'the eye tooth won't come completly down A6B5KC6Bmy top lip on the left side is crook it like it's pinched togetherD5 E6F58G6/I wear glasses but than so do most of my family H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5o`6fwhen i was in day care I was pushed of the monkey bars and fell on top of my head and had a concussion a6b5c d6e5 f6g6INTERNET FORM WOULD NOT FILL THESE BOXES IN -- BOTH UPPER AND LOWER ARM AND BOTH BACK AND ABDOMEN AND BUTTOCKS AND BACK OF RIGHT HAND HAVE MORPHEA SCLERODERMA. h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5e@6 Maria Garner67046 19 Mile Road6Barryton6Michigan 6USA6493056 989 382 7948"6flawlessmiggy@hotmail.com~ 54@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes]6TAround age 6 the upper left side of my forehead began to demonstrate an indentation.<@<@!+? DD5 6Left6Upper5 6 65 6 65 6 6!6Brown"6Brown #6$5%6psoriasis. Hair; once in a while some brilliant greyish white hairs will spring up. I joke and tell myself it's the stress of college but really...&5 '5 (6)*5 +6 ,6 -6 .6 /50515~ 253@!33*@3 D2D 46 56Left~ 6<@758595:5;6Throbbing sensational pain, as though someone had jammed a knife in my head. Doctors are trying to figure out if this is related to the syndrome; also why I suddenly have a bump on my head and numbness. Tons of fun without insurance. In fact, I just had a<50=6'forehead, sometimes the back of my neck >6?5n@6espent 5 years with a beligerent orthodonist. Teeth are still sort of crooked, but I really dont care. A6B5<C63my lips are almost "normal" but slightly unbalancedD5E6since the upper part of my forehead is indented, my left eyebrow is a little funky looking. After two surgies (one at 9, one at 11) it looks a little better. I have bangs and wear hats.F5G6I'm 20/40 in my right eye and blind as a lawsuit in the other. But I drive and things. Periphial vision and 3 D theaters are unknown pleasure to me.H6At one point the pressure in my left eye (this was several years ago; I gave up on doctors in 1997) was extra low and they had to give me some sort of steriod drops.)I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5e@6 Jada Callaway61421 Highway 130 West6 Shelbyville 6TN 6USA637160 616(jada@epco.org or jcallaway2001@yahoo.com~ 5@@ 6Female 6Right 6Romberg 6Romberg Disease6 Skin Changes 6<(@<*@!+? DD56Right6Lower5 6 65 6 65 6 6 !6Blue "6Blue #6$5)%6 Gray streak on right temple area&5 '5 (6)*5 +6 ,6 -6 .6 /50515~ 252@!33@3 D2D 4656Right~ 6<@758595:5?;66Throbbing of right eye and muscle spasms in right eye.<5 =6 >6?5Z@6QGum deterioration on bottom right side. Recently had gum grafts to repair damage. A6B5C6Thinner bottom lip on right side even after surgery. Surgery was approximately at age 14-15. Dermabrasion and some tissue replacement inside the bottom lip.D5 E6F5 G6 H6I5 J6K6~My chin area is still tender and easily prone to feeling bruised if I rest me chin on my hand or sleep on that side too often. L6 M6N5O5P5Q5R6Numerous dermatologist misdiagnosed this when the discoloration appeared. A doctor at Vanderbilt University in Nashville Tennessee diagnosed the disease. S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6Hmm. How much would you like me to elaborate? And pray tell in what form? I suppose ethos is generally more interesting, so how about a manifesto? The Drama Of An English Major Who Is Sick And Tired Of The Weirdness And General Pain In The Ass Of Having S h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5e@6Adriana Campbell616811 NE 12th St6 Vancouver6 Washington 6USA698684 6$6adrianacampbell01@attbi.com~ 56@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes 6<@<0@!+$@ DD5 6Left 6Both5 6 65 6 65 6 6!6Green"6Green #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515~ 25(@!33@3 D2Dt46kHorrible pain that can last for days, feels like your head is pulsating, worse on the left side of my head. 56Left~ 6<@758595:5;6Nausea<5*=6!Left side of face is very tender. >6?5 @6 A6B5$C6Left side of lip is raised.D5 E6F57G6.Left eye vision has progressivly gotten worse. H6I5 J6K6I have constant muscle pain in the neck and back, blury vision sometimes, skin changes on face that are more red than the rest of the skin. L6 M6N5O5P5Q5 R6 S6T5U5V5W5@X67No treatment, have been waiting to make sure it's done.Y5 Z6[5 \6]5%^6Mother took fertility drugs?_5l`6cHad minor symptoms, after car accident and damage to left side of face, symptoms rapidly progressed a6b5c d6e5 f6g6I had reconstructive surgery and for the most part, it took care of the asthetic side affects of the disease. From what I now understand, my case was very mild comparatively. h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5DU%l ~ 3  X\ ([  b A Me 4 % vT0@v@v@v@v@v@v@v@v@v@$v@v$@v@$v@v$@v@v$@v@v@v@v@Gv@v@v@vw@v@v@v@Gv@v@Gv@v@~ 5f@6 Linda Brink#613810 East Palomiono Drive6 Ft.Lauderdale6Florida 6USA6333306 954-434-89696linda.d.brink@wcom.com~ 5K@ 6Female 6Right (En coup de sabre 66 Skin Changes66-loss of eyebrow hair and atrophy of the scalp<@@<A@!+@ DD5 6Left6Upper5 6 65 6 65 6 6!6Brown"6Brown #6$5B%69I have actually lossed my hair in the scalp area invloved&5 '5 (6)*5 +6 ,6 -6 .6 /50515~ 25>@!333 D2D 4656Right~ 6<@758595:5C;6:Severe pain isolated to the right temple. That's about it.<5=6The area of my face (forehead) and scalp that is affected sometimes is VERY sensitive to touch. Frequently I have small bumps in my scalp that itch. >6?5 @6 A6B5 C6D5oE6fMy left eyebrow has fallen out has well as the eyelashes on the inside of the upper lid of my left eyeF5hG6_At least I don't think so. I'm having typical eye problems that I believe are just age related. H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]53^6*Two direct cousins have Multiple Sclerosis_5 `6 a6b5c4INJURY WITH BRUSING'd6Facial damage in car accident.e5 f6g6I would just like to find out if my constant muscle pain in my back might be tied to this disease I have because none of my doctors can seem to figure out why my back hurts all the time. h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5 f@6 Bo Andersson 66 Huskvarna 66Sweden 6 66anderssonbo@yahoo.se~ 5F@ 6Male 6Right 6PFHA 66 Skin Changes 6< @<&@!+@ DD5 6Left6Lower5 6 65 6 65 6 6 !6Blue "6Blue #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5<@63Teeth not grown straight on left side of upper jaw. A6B5+C6"Atrophy on left side of upper lip.D5 E6F5 G6 H6I5J6Atrophy on left side.2K6)Nose not straight, it points to the left. L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6I don't seem to have many symptoms other than cosmetic. My face and scalp get sensitive. Mostly it looks like I was in an accident. For the most part no one really notices my condition unless I point it out. I've been considering having an eyebrow tatooedh6The only real test I had was a "plug" taken from my scalp when I was first diagnosed. I had the opportunity to be seen my Dr. Jablonska (spelling might be incorrect) while traveling to Germany. I took a side trip to Poland and she interviewed and examinedi6Nothing really. Took something for a while that was usually prescribed for epilepsy (forgot the name) but it only dulled my senses so I stopped. Sorry to be so vague. I had a close friend/boss who developed full blown systemic scleroderma and has since di j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5@f@6 Evelyn Filla 66 St. Louis6Missouri :USA663128 66fillaj@swbell.net~ 5D@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes 6<@<D@!+B@ DD5 6 65 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5g@6^I have lost several teeth on my left side. Those that are still there have a root canal/crown. A6B5 C6D5 E6F5 G6 H6I5 J6uK6lI have very few eye lashes on the lower part of my left eye. My left cheek, chin, and neck are all affected. L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5_\6VMy 12 year old daughter has had seizures, but has been seizure free for about 4 years.]5 ^6_5 `6 a6b5c^d6UPerhaps an inflammation in a tooth at 3 years of age. Could this really be a trigger?e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5`f@6 preston nelms6702 weaghington road6bradley 6s.c. :USA6298196 864-227-27726jonbean@emeraldis.com~ 5B@ 6Male 6Right 6 Parry-Romberg 6Romberg6 Skin Changes 6<@<B@!+@@ DD56Right6Lower5 6 65 6 65 6 6!6Green"6Green #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 25346it seems that i have always had headaches. just over the past six months they have been unbearable and severe and they are messing with the rest of my life.56Right~ 6<?758595:5;6on 2 recent doctor visits ( because of the pain) this trigeminal neuralgia was brought up by the doctor. of course they did not know if it was related to th rombergs. i have an mri scheduled for may 16 2002 at musc in charleston s.c. and we will go from t<5f=6]it is on the right side of my face. doctors have been trying to blame it all on my bad teeth. >6?5@6my bottom right teeth are all messed up. musc actually did oral surgery to remove my wisdom teeth and since then when they hurt i just gokA6band get them pulled- thats what i was praying the problem was but i guess i couldnt get that luckeB5PC6Gmy right lip was pulled up as my face atrophied. still does to a point.D5)E6 my right eye brow drops a littleF5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6I participated in a program run by the U.S. government in the late 1970's in which silicone was injected into my check and chin to help the assymetry. I also have a silicone plate in my chin from the early 1970's. I was treated although never given a diagh6I would appreciate any information that you can give me about my new diagnosis. I was in the dark for so many years and I am so releived to finally know what the diagnosis is. i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5f@6 Carl Drago6W4249 Ridge Drive6LaCrosse 6WI 6USA6546016 608-788-26486cjdrago@gundluth.org~ 5H@ 6Male 6Right 6Romberg 66 Skin ChangesS6Jprogressive facial asymmetry noted in photographs between 2 and 4th grades<"@<(@!+@ DD5 6Left6Lower5 6 65 6 65 6 6!6Hazel"6Hazel #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56~ 6<@758595:5 ;6<5 =6 >6?5K@6BClass II malocclusion with cross bite on the left (affected) side. A6B5.C6%left side is less full than the rightD5 E6F5 G6 H6I5J6less full on the left K6L6Atypical uvula; M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6my life has been some what miserable. i had a free omentum flap done at the medical college of georgia in 1985 when i was 20. of course this was very painful and my face has been a lot fuller on that side since the surgery. it has been very numb for many h6i have been a guinea pig for alot of tests. so many i cant remember. when i was five i had to lay in the sun and take pigment medicine.yi6pthere should be financial aid to help us. i am glad they gave the new medications to me cause i can afford them. j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5f@6 Anonymous)6 1/4 Gibson Court, Altona Meadows6 Melbourne6Victoria6 Australia 63028 66ozphila@space.com~ 51@ 6Male 6Right 6 Parry-Romberg :PFHA6 Skin ChangesC6:The I noticed the left side looked thinner than the right.<.@<0@!+? DD5 6Left 6Both5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5=6}I have facial pain after the two fat injection operations I had. The doctors said the pain might have been face just healing. >6?5 @6 A6B5)C6 Left side of the lip is thinner.D5 E6F5 G6 H6I5NJ6EI believe that the left side is slightly thinner than the right side. K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5xX6oThe reconstructive surgery were only fat injections. The doctors think my case at this stage is only very mild.Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6No concerns. I wish you well. I am a prosthodontist who has been practicing for 20+ years and have only seen 1 patient with this disorder. Good luck. h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5f@6Anselma Jurez Noriega)6 24 Calle 33-22 Zona 7 Col. Kjell6 Guatemala6 Guatemala6 Guatemala6010076 (502) 43497276anselmiju@yahoo.com~ 5=@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes 6<.@<9@!+$@ DD5 6Left6Lower5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5=6 left side >6?5@6they are thinner A6B5+C6"my lower lip is thiner in one sideD5 E6F5 G6 H6I5)J6 my tongue is thinner in one partK6vI have had two cirguries but I have not been satisfied with them because in a little time the problem is evident again L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c%STRESSzd6qI reckon it could be stress. Maybe even puberty, larger amounts of testosterone in puberty can do strange things.e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5f@6michael thomas&65750 hiram powder springs rd.6powder springs6georgia :USA6301276 770-439-98526 metjmt@cs.com~ 5F@ 6Male 6Left 6Romberg 66 Skin Changes 6<@<E@!+D@ DD5 6Left 6Both5 6 65 6 65 6 6 !6Blue "6Blue #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5 @6 A6B5 C6D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6wIt would be great if someone would find the cure for this disease because it is too bad having it, I wish you good luck h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5g@6Jennifer Alcorn6 492 Boom Road 6Saco6Maine 6USA6040726(207) 284-02086alcorn5@gwi.net~ 5;@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes 6<@<,@!+(@ DD56Right6Lower5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515~ 253@!331@3 D2D{46rLike someone is squeezing my head with vice-grips; sensitivity to light & noise; can't focus; nausea - no vomiting56Right~ 6<@758595:5 ;6<5 =6 >6?5@6They are crooked on the right side in back. Have had braces twice; helped the rest of my teeth but the right side is never straight; like a curved line of teeth. A6B5"C6Not as big on right side.D5 E6F5G6w?maybe? Recently have noticed pain & yellow spot in my right eye - interestingly, recent diagnosis of "lichen sclerosusxH6olead me to investigate Parry-Romberg's also and I read about eye problems. Have not been seen for it yet (eye).I5+J6"Bigger on left side than on right.NK6EItchy skin. Could the lichen sclerosus be related to Parry-Romberg's? L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5'`6Car accident; mild concussion. a6b5c d6e5 f6g6i have an identical twin who does not have the disease. know anyone who would like to see if it is genetic? i would like to know how i got this disease and to get a cure or surgical proceedure to rectify the effects of it! oh, by the way my twin is right  h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5 g@6 Lynda Renouf"626 Kaikoura St, Henderson6Auckland 66 New Zealand 6!6(09)8387024 or 0253162176l_renouf@hotmail.com~ 58@ 6Female 6Right 6Romberg :PFHA6 Parry-Romberg6 Skin Changes 6<.@<.@!+ DD56Right 6Both5 6 65 6 65 6 6 !6Blue "6Blue #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5=6}Sometimes I have pain in my forehead and around my eye, where the atrophy is. Also sometimes in the back of my head and neck. >6?5 @6 A6B5FC6=The right side of my lips are slightly thinner than the left.D5E6The hairs on my right eyebrow, nearest to my nose , have fallen out, where the atrophy is. There is also what seems like fat betwwn my eyelid and my eyebrow.F5 G6 H6I5LJ6CThe right hand side of my tongue is slightly smaller than the left.K6My nose, the right hand side is thinner around the nostril than the left one. Also I have two bald patches on my head, one on the very top, the other on thelL6cback left top(confused??Sorry, it's hard to explain in words.) They have almost joined at the back. M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5Wf6NWas told I was borderline so didn't need any treatment. Why? Are they related?dg6[We need a cure or reversible treatment! This is really difficult to live with, emotionally. h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5@g@6Jared R. Fields6N. 7007 Neveda Apt.456Spokane 6WA :USA6992086 509-869-48746jayfields69@yahoo.com~ 58@ 6Male 6Left 6Romberg 66 Skin Changes 6<0@<0@!+ DD5 6 65 6 65 6 65 6 6 !6Blue "6Blue #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515~ 250@!333 D2D46xget tremdous headaches that feel like somebody has put me head in a vice and closed it. They go front to back of my head 56Both~ 6<?758595:5 ;6<5 =6 >6?5 @6 A6B5 C6D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5`g@6 Adam Smith61408 Williams Blvd6Richland 6WA 6USA699352 66ads1923@yahoo.com~ 5?@ 6Male 6Right 6Romberg :PFHA6 Skin Changes 6<1@<?@!+,@ DD56Right6Upper5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5 @6 A6B5 C6D5HE6?no hair growing on my right eyebrow or top part of the eyelash.F5KG6Bi don't know if it is related, but my right eye gets blurry often. H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5g@6Seth David White62333 Basswood Drive6 Little Elm 6TX 6USA6750686 972-668-90306grdane03@msn.com~ 5$@ 6Male 6Right 6 Parry-Romberg 66 Skin Changes&6left side of face sinking in.< @<"@!+? DD5 6Left6Lower5 6 65 6 65 6 6 !6 "6 #6$5%6Most of his hair is a very white-blonde, but he has a spot of dark red hair in a circle. He has had this since birth, thought it was from the internal cardiac monitor that they screwed into his head during birth.&5 '5 (6)*5 +6 ,6 -6 .6 /50515~ 25 @!333 D2D<463severe pain with vomiting and sensitivity to light. 56Left~ 6<@758595:5&;6I'll have to check with Seth.<5 =6 >6?5F@6=His adult teeth are still coming in and they are very crooked A6B5 C6D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5Z6My husband remembers an uncle that had 'something wrong with his face'. Dave thought he had muscular dystrophy . Seth's older brother, Joshua, age 19, also has some deformity in his face[5c\6ZI think my husbands sister takes Dilantin. That would be Seth's aunt on the father's side.]5^6Seth had 2 sisters that died of heart disease, he has had tachycardia from an ancellary pacemaker sight that seem to have resolved._5u`6l6/7/01 CRASHED ON BICK, HAD 6 STITCHES IN HIS HEAD, THIS IS WHEN WE FIRST REALLY NOTICED THE FACIAL CHANGES. a6b5c d6e5 f6g6A long dent from the middle of my skull down to my right eyebrow. the skin is attached to the skull and there is no hair growth in that area. I have not been proffesionally diagnosed yet, but I have seen a doctor and he and his coleague both determined thh6I first noticed the dent when i was 19, but looking back in pictures it was visible when I was 17. It seems to be getting worse as i get older. i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5g@6 Tracey Adams)6 15 Royston Avenue,Basildon,Essex 6 6 6UK6SS15 4EW 6&6tracey@adams800200fsnet.co.uk~ 5B@ 6Female 6Left 6 Parry-Romberg 66 Skin Changes06'My hair started to fall out in one spot<2@<2@!+ DD5 6Left 6Both5 6 65 6 65 6 6!6Hazel"6Hazel #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5 @6 A6B5=C64the left side lip is really thin and droops slightlyD5 E6F5|G6sI now need to wear glasses as my left eye is quite week,and the eye doesn`t go to the sides or up and down properly H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6His growth rate has dropped dramatically. He was born 8lbs 1 oz 20 inches and was always in the 95% on the growth charts. Within the last 2 yrs he has not grown appreciably. He is now in the 10%. He had an appt with the Pediatric Endocrinology at the Univh6Seth's older brother, Joshua, age 19, also has some deformity in his face. Dr Sinn at UTSW, did a bunch on xrays and photo's ect. He would need a Laforte and something else to help bring his twisted jaws into some type of alignment. He cannot close his lii6They have talked to us about reconstructive surgery. Dr P Craig Hobar MD, craniofacial at UTSW, said that the disease should stop when Seth reaches puberty. But after reading some of the stories on the internet, I wonder if that is correct information. It j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5g@6Nicola Lindsay6159 Taybridge Road6London 6 6UK6SW11 5PY6 07753 96303261NJL@lineone.net~ 5<@ 6Female 6Right 6Romberg 66 Skin Changes 6<@<.@!+ @ DD5 6Left 6Both5 6 65 6 65 6 6 !6Blue "6Blue #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5@6xGums not developed or disappeared. Teeth wouldn't adjust when I had a brace which has later been attributed to Rombergs. A6B5pC6gDefinately slanted and don't lie straight. Better when I keep up with my eletric stimulation programme,D5fE6]Not really except the way it grows into the shape of my brow. I think they both move the sameF5G6Not sure if its related by my left eye is actually my stronger eye, my right eye is very weak and totally dependent on my left eye. H6I5 J6K6Yes I have a bald patch of hair on left hand side on the top of head that has been there for quite a few years and in that area my skull is sunken as well. Size 4cm x3 cm. L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]57^6.My father has Myberg? Not sure if its relevant_5 `6 a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5g@6 Joanne Harris$62/20 Luke Court, Summerhill6 Launceston 6Tas6 Australia 67250!60363445091 or 0417562173 6jlharris505@hotmail.com~ 5;@ 6Female 6Right 6Romberg 66 Skin Changes6xA frown line in the centre of my forehead which developed into a large dent with the depletion of fat and muscle tissue.<3@<4@!+? DD56Right6Upper5 6 65 6 65 6 6 !6Blue "6Blue #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515~ 25,@!333 D2D 4656Right~ 6<@758595:5;6Severe pain on right top side of head, constant and thumping pain, vomiting, fuzzy vision on usually right or sometimes left side, followed by blind spots, directly where I am looking, which get bigger as the headache goes on, numbness of hands, feet, lip<5=6Perhaps not pain, but tightness on the right-hand side of my forehead, feels a bit like a tight belt around my head, constant tension, which is quite tiring. >6?5W@6NNot exactly sure, but quite a few of my teeth on the right top side have died. A6B5 C6D5E6My eyebrows are not even, the left one is a lot higher than the right, due to fat and muscle tissue loss. My forehead dent goes down through my right eyebrow.F5G6Short sighted, astigmatism in right eye, and in the last few years I have experienced some peripheral vision loss, according to my eye specialist this is due to a rare side effect of migraines? H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5X6I have had liposuction from my stomach to be able to have fat injections into the right hand side and centre of my forehead, I had surgery nearly 3 months ago, have lost about 30% so far but is a huge improvement and the tightness is nearly gone, no headaY5 Z6[5 \6]5d^6[breast cancer, diabetes, haemachromatosis, soriosous (skin condition not sure of spelling)._5p`6gHead first off a motorbike onto the ground(forehead) aged 14 /blow to the head middle forehead aged 19. a6b5c4INJURY WITH BRUSINGd6I kneed my self in the face whilst doing gymnastics. I bruised where I hit myself on my top lip left hand side, the bruise still hasn't gone!!e5 f6qg6hIf its any use, I was born in Zambia, Africa, I know some people think Romberg is linked to the tropics.h6After surgery when to a physiotherapist, Diane Farragher who specialising on facial issues. TO keep the muscle transplanted from my back in my face bulky I have an electrical stimulator which I use. As well as making the muscle remain bulky part of teh pr i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5h@6 Rhonda Dill61970 Hawk Street S.E.6 Cleveland 6TN 6USA6373236 423-473-92296crdill_36@yahoo.com~ 5>@ 6Female 6Right 6 Parry-Romberg 66Epilepsy6I had a seizure when I was five years old and the facial changes started happening after. My left side forehead and left side jaw was affected.<@<$@!+@ DD5 6Left6Upper56Right 65 6Left 656Right 6Both !6Blue"6Other:#61My left eye has a blue shade more than the right.$5%6vMy hair is not different colors but I have patches of baldness on the left side of the top front close to my forehead.&5~ '5@!(#( D'D)6The first one I had at age five was a grand mal seizure. Until the age of 17, they were petit mal and changed back to grand mal until the present time.*5 +6 ,6 -64$.6dilatin, tegretol, zonegran /50515 253 46 56Both 6<758595:5 ;6<5 =6 >6?5h@6_I lost two of my permanent teeth on my lower jaw shortly after they came in when I was younger. A6B5 C6D5 E6F5G6I have night blindness and have trouble seeing at night driving. The last seizure I had was triggered by the headlights of an oncoming car H6I5AJ68The left side of my tongue has hemiatrophy like my face. K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c%STRESSXd6OI thought extreme stress at the time and also being hit in the head at 19 yearse5 f6g6I also have dizzy spells occasionally and days where I feel like I'm floating around in a bubble (just not with it) and also really confused and can't remember anything. I also have trouble keeping my weight on, I seem to lose weight for no apparent reaso h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5 h@"6sara dunne nee rosenfield61 speedy cheval street6 fremantle 6w.a6 Australia 661586 0893397909"6speedydunne@global.net.au~ 5=@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes 6<?<(@!+'@ DD56Right6Upper5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5;6i've had 'headachs' on and off for 14 years at first they were classed as migraines and were treated acordingly.i started to notice that the pain is always on my right side of my forehead the same side as my rombergs.over the last 3 years it's been unbear<5 =6 >6?5 @6 A6B5 C6D5/E6&lack of movement ie.when frowning ect.F5XG6Oi have an atigmatisium in my right eye ?due to rombergs (sorry i'm not the best H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6When I was diagnosed with Parry Romberg in 1980, six doctors from different countries observed my surgery because it is such a rare disease. Dr. Phil Craft from Chattanooga, Tennessee performed my surgery at Erlanger Medical Center and I have been told by h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5@h@6 Axel Wurster 6 6 66Germany 6 66axelwurster@web.de~ 5A@ 6Male 6Right 6PFHA 66 Skin Changes 6 < <+5 6Left6Lower5 6 65 6 65 6 6 !6 "6#6Green and Brown$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?55@6,Tissue surrounding the teeth is disappearing A6B5C6Left side is thinnerD5 E6F5 G6 H6I5 J6K6Some times it is itching in the cheek. I have psoriasis at the left cheek and around the eyes. As a child I had morbus perthes in my left hip which I believe could be of relevance. L6 M6N5O5P5Q5R6 Ultrasound S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5G`6>I fell off a swing as a kid and had to get stiched on the head a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5`h@6 John Leuck611554 state hwy 336Cashton 6WI :USA6546196(608)-654-53586jpleuck@hotmail.com~ 52@ 6Male 6Right 6PFHA 66 Skin Changes 6<,@<.@!+? DD56Right6Upper5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5 @6 A6B5XC6OThere is a darkened, slightly sunken in, area of skin above my right upper lip.D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5oR6fA dermatologist only looked at my head, told me it was hemiatrophy and said it was basically harmless. S6T5U5V5W5eX6\I took some kind of medicine for a month or two, but it didn't help, so I stopped taking it.Y5Z6[5 \6]5 ^6_5`6~I was hit with a baseball and a baseball bat before when I was in little league, but not in the spot where the hemiatrophy is. a6b5c d6e52f6)According to blood test a pretty sure yes g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5h@6 Corri D Carr67812 Hilo Court6 Diamondhead6 Mississippi 6USA6395256(228) 586 0776$6Carr.Corri@worldnet.att.net~ 5:@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes 6<6@<9@!+@ DD5 6Left6Lower56Right 65 6 65 6 6 !6Blue "6Blue #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 25346Start on the left side and I can not stand light or the smell of food. They can last for serveal days. longest time was 4 days. 56Left~ 6<@758595:5$;6They can make me every ill.<5=6left side of face will have shape stabbing pain and then here lately my lip will go numb and the nerve will pull the lower part of the lip down for a couple of secondsm>6dThe joint will also be pulled in and out of the sockit. This and go on all day about 3 to 4 an hour.?5 @6 A6B5 C6D5 E6F5 G6 H6I5J6left side of my tongue now will swell up with the spasms and I have a tend a see to bit that side of my tongue during the spasmsK6It also effects my speech when I've had a couple of the spasms during the day. and the spasms happen the most at night when I go to bed. L6 M6N5O5P5Q5 R6 S6T5U5V5W5X6Trileptal(oxcarbazepine), Neurontion 800mg 3 times a day, Elavil(amitriptylin) 25mg 2 times a day, klonopin(clonazepam .05mg 1/2 tab 3 times a day.Y5 Z6[5 \6]5!^6Grandmother had Byepoler_5 `6 a6b5c d6e5 f6g6The area of skin on my forehead started as only looking like a bruise, but slowly became dented in slightly, and it has not changed in size for a couple of years now. h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5h@6SHARON M STONECIPHER6455 24TH AVENUE NORTH6 ST PETERSBURG6FLORIDA 6USA6337046 727-821-99516NORAROK54@AOL.COM~ 5G@ 6Female 6Right 6Romberg 66 Eye problems 6<9@<>@!+@ DD5 6Left6Upper5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515~ 256@!333 D2D 46 56Both~ 6<@758595:5;6USUALLY CAN BE PINPOINTED TO ONE AREA, BUT NOT NECESSARILY THE SAME AREA EACH TIME. SOMETIMES HEADACHE MEDICINE WILL RELIEVE IT, SOMETIMES NOT.<5 =6 >6?5~@6uONE LEFT LOWER TOOTH AFFECTED - DENTIST CALLED IT "ROOT REABSORPTION". LOST TOOTH AND NOW HAVE A BRIDGE IN IT'S PLACE A6B5 C6D5wE6nSINCE LEFT EYE IS SET FURTHER BACK INTO EYE SOCKET, EYEBROWS ARE UNEVEN. LEFT EYEBROW SETS ON UPPER ORBIT RIM.F5G6LEFT EYE LID DOES NOT CLOSE COMPLETELY. CONSTANT PROBLEM WITH THIS - DRY AIR, BRIGHT LIGHTS,AND WIND ALL AFFECT LEFT EYE. CONSTANTLY PROBLEM WITH EYE IRRITATION, AND VISION IS POORER IN THIS EYE. H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c% PREGNANCY4d6+my pergency made the spasms come full swinge5 f6g6left side upper lip is a little smaller then the rest of the lip. and sometimes during the spasms the lip will go numb and be pull down or can sometimes be pulled up. that just started the other day and this can go on for serveal minutes, and sometimes wih6I had jaw surgery when I was 16 back in 1992 and everybody seemed to think that this is why I'm having the problems that I'm having. The spasms get worse when I'm under a lot of stress.i6I hope that I can learn more about this disease and if by doing things like this will help me and others with this disease I see no ethical problems. I have a one year old daughter that I would like to see grow up and not have her to see me go though the  j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5h@6 Tom Laurich6 477 Dunbar Rd6 Tallmadge 6Ohio 6USA6442786 330-630-05956tlaurich@neo.rr.com~ 5A@ 6Male 6Right 6 Parry-Romberg 66 Skin Changes 6<@@<A@!+@ DD5 6Left6Upper5 6 65 6 65 6 6!6Brown"6Brown #6$5d%6[Bald spot with skull depression left rear skull area- has beenfixedsize - not gettinglarger&5~ '5A@!(#@( D'D)6Focal seizures of right leg only for about one year -- then had one tonic/clonic full seizure before going on seizure \ medications*5 +6Leg,6Right -61.6just one - Carbitrol /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5 @6 A6B5 C6D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5Y`6PMotro cycle accident -- torn left ear drum from compression of the helmet (1986) a6b5c d6e5 f6g6My Mother when pregnant with me took the morning sickness pill Debendox which the family though might have contributed to the condition. h6)i6 Not at all. full marks for you. j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5i@6Jennifer Haley6114 Spring Street6 Lake Charles 6LA 6USA670605 66mhaley3@compuserve.com~ 5@@ 6Female 6Right 6PFHA 6 6V6MThe right side of my face began to disappear when I was in elementary school.<"@<0@!+@ DD56Right6Lower5 6 65 6 65 6 6 !6Blue "6Blue #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5V=6Msometimes experience pain on the right side of my face. It is not very often. >6?5 @6 A6B5 C6D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5X6I have never had any treatment. When I was first diagnosed the doctor I was seeing wanted to place proplast in my face. My mother decided that was not an option. I have been to see a doctor as an adult, who discussed using muscle grafts ( I have NO muscleY5 Z6[5 \6]5 ^6_5`6Not a head injury but neck pain. It was discovered through MRI that one of my cervical vertabrates was fused together naturally...I don't know if there is any connection a6b5c d6e5 f6g6Just heard about this disease/diagnosis today June 11,2002 Basically I hada small baldspot then two to three year later I started having right leg seizures -- the seizure got more frequent and I started seeing a neurologist. THen I had a full body sseizur h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5 i@6Tiffany Schmoyer6 RR 2 Box 2086Mt. Pleasant Mills 6PA 6USA6178536(717) 444-3514 6s1371973@cedarville.edu~ 53@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes 6<@<.@!+(@ DD5 6Left6Lower5 6 65 6 65 6 6!6Other"6OtherX#6Othey appear to be in the process of maybe changing from hazel to a more blueish$5o%6fI believe that this is unrelated to my PRS but I do have a slight blonde streak at the nape of my neck&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5=6I don't know the term trigeminal neuralgia but I do have a lot of TMJ (temporal mandibular joint) pain. I would guess that this is from the wasting of the muscle and possibly other soft tissue around the joint. >6?5 @6 A6B5gC6^On the left side, my lower lip is smaller. It makes the right side look fat or almost swollen.D5 E6F5 G6 H6I5 J6K6My left eye lid (NOT my vision) is a little droopy. This is barely noticeable and just recently discovered. so complications have been noticed as of yet. L6 M6N5O5P5Q5wR6nregular X-rays not necessarily a CT scan All sorts of MRI, MRA and whatever else they can do with that machine S6T5U5V5W5X6different creamsY5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5@i@ 6June 66 Ann Arbor6 Michigann :USA 6 66chaia@netscape.net~ 5H@ 6Female 6Right 6 Parry-Romberg 6PFHA 66a dark patch of skin on my cheekbone near my ear combined with a deep indentation under my lower lip (a half-inch gash very deep) and a line from my hairline to my eyebrows dividing my forehead in half. I also have a line on my stomach to match it<C@<G@!+@ DD56Right 6Both5 6 65 6 65 6 6!6Brown"6Brown #6$5%6just normal greying&5 '5( )6*5 +6 ,6 -6 .6 /50515~ 25F@!33@3 D2D46I have only had 2. There is no pain but there is the bright light problem, quite severe, actually. I did not know they were migranes until recently. 56~ 6< @758595:5 ;6<5 =6 >6?5K@6Bmy dentist says I have less plaque on the right side at cleanings. A6B53C6*I am losing fullness in my lower right lipD5 E6F5G6my eye hurts sometimes H6I5UJ6LMy doctor says the right side of my tongue is much less fleshy than the left K6 L6 M6N5O5P5Q5_R6VThey have just taken blood tests, shall I email you next week when the results are in? S6T5U5V5W5@X67exercises from a physical therapist to manage the paiinY5 Z6[5 \6]5 ^6_5p`6gWhen I was 8 I had a concussion, and had xrays taken. I never lost consciousness, but had bad headaches a6b5c d6e5 f6g6I know that my information may be sketchy. It is hard to remember it all. If you have any more quesions feel free to contact me. h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5`i@6Valerie Scannell#6604 Alameda de las Pulgas,6 San Mateo6 California 6USA6944026 650 619 80246jscannell@hotmail.com~ 5(@ 6Female 6Right 6PFHA (En coup de sabre6 Skin Changes 6<@<@!+@ DD56Right6Upper5 6 65 6 65 6 6!6Brown"6Brown #6$5%6Alopecia&5~ '5@!(#( D'D-)6$Single seizure age 2, left arm shook*5 +6Arm ,6Left -68 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5 @6 A6B5 C6D5#E6Hair loss and eyelash lossF5KG6BRight pupil not reactive - severe iriti/ uveitis. Globe retraction H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W58X6/Methotrexate for a couple of months then stopeeY5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5ef6\I am from New England (near Lyme--ground 0!) but have not, to my knowledge, had lyme Diseaseg6I have noticed that the pain is more manageable when I do face exercises. I feel, in general, very asymmetrical. The line down my face and stomach has always been there. In the MRI they just took in the course of the diagnostic tests (I was diagnosed yest h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5i@6Yvonne Butterworth6555 Blackburn Road6 Oswaldtwistle6 Lancashire 6UK6BB5 6AY6 01254 389792 6No~ 5A@ 6Female 6Left 6 Parry-Romberg 6PFHA, Morphoea 6 6<1@<A@!+2@ DD5 6Left6Lower5 6 656Right6Chest5 6 6 !6Blue "6Blue #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56Left~ 6<@758595:5 ;6<5 =6 >6?5 @6 A6B5 C6D5 E6F5UG6LNight time vision poor, eye closes when tired. I struggle to drive at night, H6I5 J6K6Itchy left cheek L6M6 Awaiting scanN5O5P5Q5 R6 S6T5U5V5W5X6 PUVA 2000Y5Z6adopted[5 \6]5 ^6younger brother hgas LD_5K`6BWhen younger aged 9-10 I had a huge head bump falling from a slide a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5i@6Ms.Rubin6 7 Koznitz Dr.6Monroe 6N.Y. 6USA6109506 845-782-9490"6jr7826546@frontiernet.net~ 5@ 6Male 6Right 6Romberg 6 Parry-Romberg6 Skin Changes 6<<@!+@ DD56Right6Lower5 6 65 6 65 6 6!6Brown"6Brown #6$5%6PALE RED,BLOTTCHY&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5Q@6HTHE UPPER RIGHT PULLS TO THE RIGHT SIDE.THE LOWER LEFT & RIGHT IS DROOPY A6B5 C6D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5R6CEPALOMETRIC X-RAYS S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5i@6 Barb Bittner61381 Penbrooke Trail6Dayton 6OH 6USA6454596 937-435-32906blbittner@aol.com~ 5D@ 6Female 6Left 6PFHA 6Romberg6 Skin ChangesS6Jat age 20 noticed left side of my face was getting smaller than the right.<4@<5@!+? DD5 6Left6Lower5 6 65 6 65 6 6 !6Blue "6Blue #6$5*%6!Nothing other than gray mixed in!&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5 @6 A6B5 C6D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5(R6I had nerve tests 20 years ago. S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6My son was born with Ronberg Syndrome.He looks like he has had a bells palsey. The Right side of his face is missing fatty tissue and one part of his skin is dry. His nasal fold is not in the center,and his lips are droopy. He has assymetry in his jaw. Hih6had a normal pregnacy,carried full 9 months,& normal delivery. (Forcepts were not used) The assymetry was noticed right after birth i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5i@6CHRISTINA OCHOA61210 N HERMOSA AVE6BANNING 6CA 6USA6922206 909 922 06956OCHOAC28@HOTMAIL.COM~ 5=@ 6Female 6Right 6 Parry-Romberg 6PFHA, Morphoea6 Skin Changes6DEAVIATED NOSE<"@<8@!+.@ DD5 6Left6Lower5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515~ 258@!33.@3 D2D&46AWFUL PAIN-MIGRAINE HEADACHES 56Both~ 6<@758595:59;60NAUSE, VOMITING, ANXIETY SCALP IS VERY SENSATIVE<5=6LEFT SIDE OF FACE WHEN I WAS 12 ORTHODONTIST SAID IT WAS DUE TO THE EXPANSION OF MY PALET. NOW THEY TELL ME IT'S PART OF THE ROMBERGS >6?5 @6 A6B5HC6?LIP IS THINER ON LEFT SIDE AND IT LIFT TO ONE SIDE WHEN I SMILED5 E6F5 G6 H6I5 J6/K6&MY PALATE DID NOT DEVELOPE WIDE ENOUGH L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y56Z6-UNSURE IF MY 11YR OLD DAUGHTER MIGHT HAVE IT.[5 \6]55^6,LUPUS ERYTHAMATOUSES (MOTHER) AUTO IMMUNE DZ_5 `6 a6b5c4INJURYd6At age 17 I was hit in the head (right side) with a girl's elbow, while she was getting something from her locker. I saw stars and blacked out from the blow. I have always wondered if this had anything to do with the onset of Rombergs.e5 f6g6After being diagnosed with Romberg's (on my 21st birthday) I have had multiple surgeries in an effort to minimize the affects of the atrophy on the left side of my face. My intial surgery was a free flap transfer of my omentum to my face. Since then, I ha h6i6 Good luck. j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5j@6melissa graves&6250 Brownswitch Rd. Apt. #1076Slidell 6La 6USA6704586 985-847-93216magravesg@netscape.net~ 58@ 6Female 6Right 6Romberg 66 Skin Changes 6< @<5@!+*@ DD5 6Left6Lower5 6 65 6 65 6 6 !6Blue "6Blue #6$5?%66I have a streak of silver hair in the back underneath.&5 '5( )6*5 +6 ,6 -6 .6 /50515~ 254@!33(@3 D2D46I have not been diagnosed with migraine headaches, but i do have very severe headaches from time to time and the only thing i can do to ease the pain is sit in a dark room and close my eyes 56Left~ 6<@758595:5*;6!nausea, trembling hands, sweating<5p=6gI get pain on the left side of my face which usually starts around my chin and moves up toward my eyes. >6?5 @6 A6B5C6my lips are unevenD5 E6F5 G6 H6I5 J6K6yI do have alot of joint pain in my fingers, knees, and toes. I don't know if this is related to Romberg's disease or not. L6 M6N5O5P5Q5oR6fMy Romberg's disease is located on my chin. When I was nine years old, I had a biopsy done on my chin. S6T5U5V5W5yX6pI had one phase of cosmetic surgery when I was 12, but the surgery was never completed due to financial reasons.Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5D)l k #   . + V z k k 2 Df. vT0@v@v@v@v@v@v@v@v@v@$v@v$@v@$v@v$@vv$vvvvGvvvvwvvvGvvGvv~ 5 j@6 Kathy Luczak 62810 College View Drive6 Churchville 6MD 6USA6210286 410-569-48446tlynch@baynational.com~ 5G@ 6Female 6Right (En coup de sabre 6PFHA6 Parry-Romberg6 Skin Changes 6<@<=@!+9@ DD5 6Left6Lower5 6 65 6Left 6Both5 6 6!6Green"6Green #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515~ 25=@!339@3 D2D746.Sharp stabbing pain in left temple to jaw line 56Left~ 6<@758595:5;6dizziness, nausea<5>=65left side, sharp, stabbing pain fromtemple to jawline >6?5@6left side in bad shape; can't open my mouth long enough (without pain) to have them treated. dentists don't beleive I can't keep my mouth open - very discouraging A6B5 C6D5 E6F5MG6Ddiagnosed 1978 w/ hypotony in left eye - legally blind 20/900 vision H6I5+J6"no atrophy, but curves to the leftK6left breast larger than right; indentation on left flank between shoulder blades; sensitive to touch; left side of abdomen has dark brown skin patch L6 M6N5O5P5Q5JR6Abiopsy of dark patch on abdomen led to diagnosis of Parry Romberg S6T5U5V5W5MX6Dsome type of foul-smelling salve whne I was 4 years old...no outcomeY5 Z6[5 \6]5 ^6_5 `6 a6b5cd6zWhen I was young I was very allergic to poison ivy and everytime I would break out with it, it would start out on my chin.e5 f6 g6 h6Ki6BI am very thankful that someone is doing research on this disease. j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5@j@6Cristina Echemendia65557 Bobbywood Ave.6San Jose 6CA 6USA6951246 408-952-42546echemendia_c@vta.org~ 5C@ 6Female 6Right (En coup de sabre 66 Skin Changes 6<$@<*@!+@ DD5 6Left 6Both5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5=6|I had pain initially when the disease was active. I occasionally have pain now. The pain was on my left side of the jaw bone >6?5 @6 A6B5aC6XYes my entire left side of the face is smaller than my right including my lip and tonge.D5RE6IMy left eyebrow drops down more. There's no symmetry with the right side.F5 G6 H6I5J6vThe left side is smaller. My left ear canal is significantly wider than my right one due to the tightness of that area K6 L6 M6N5O5P5Q56R6-Had a biopsy of a piece of skin from my chin. S6T5U5V5W5X6I had fat graphs inserted, which didn't work. Had collagen cream. Took some pills, however I don't recall what they were, need to go back and find the boxes. I did keep them for some reason.Y5 Z6[5 \6]5Y^6POn my mother's side of the family I have a few relatives with nervous disorders._5`6|When I was little(around 8 or 9) I felt off a swing and had to get stiches on the back of my head. It was a pretty hard hit. a6b5c d6e5 f6}g6tHad tissue implanted in my face from left breast in 1974 - rejected; solastic (?) implant left cheek 1975 - rejected h6$i6thank you for your interest j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5`j@6 Beth Williams63711 Casa Ridge Drive6Mesquite6Texas 6USA6751506 972-682-6802 6bethwilliams6@attbi.com~ 5E@ 6Female 6Right (En coup de sabre 6Romberg 6PFHA6 Skin Changesq6hLong story short - indention on my forehead over left eye. Thought to be from forceps delivery at birth.<@<@@!+?@ DD5 6Left6Upper5 6 65 6 65 6 6 !6Blue "6Blue #6$5%6Bald spot on top left side of head - totally devoid of hair follicles. And now I am getting a concentration of Gray in the front center of my hairline.&5 '5( )6*5 +6 ,6 -6 .6 /50515~ 25*@!33&@3 D2D 46 56Left~ 6< @758595:5;6Started having migraines with monthly period. But after the onset of problems with "disease", the migraines became a blinding first, then dizzy/nausious and ultimately intense pain behind left eye. Doctors could describe pain, but didn't quite get the bli<5=6I don't know if it's pain specifically, as much as pressure. Doctors just don't know what to associate it with, other than the general diagnosis. >6?5 @6 A6B5 C6D5E6Bone loss over left eye. Had eyelid lift in 1993 due to Ptosis diagnosis at the time, they also injected Hydroxy Appetite Granules at the time to restore brow bone that was "caving in". Still feels funny, wish I hadn't let them do that.F5G6I have a "permanent wink", left eyelid has dropped almost to closed. One Dr. stated that at this point even if they could restore normal use of eyelid, that eye has weakened to the point where vision would not be decent.H6I can still see to read, if looking down, but between age and everything else, it is a chore sometimes and too much can lead to headaches. TongueI5 J6 K6 L6 M6N5O5P5Q5}R6tInitially had a Tensilon test for Myasthenia Gravis (negative res.), Also had biopsy of skin from bald spot on head. S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6 g6h6My main concern is that I want to know as much as possible if this is a hereditary disease and does my 10 month old daughter have any predisposition to develop this disease in her later years? Any ideas on what causes this disease, is there a common backg i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5j@6 Bree Pizano#63522 Evan Acres Rd, Apt 156Madison 6WI 6USA6537186(608) 224-17686sopita_00@elsitio.com~ 53@ 6Female 6Right 6 Parry-Romberg )linear scleroderma6 Skin Changes 6<$@<(@!+@ DD5 6Left6Lower5 6 65 6 65 6 6!6Green"6Green #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5@6The teeth on only the left side of my face (the affected side) were not straight like the right. The adult canine tooth would not grow in properly. A6B5dC6[The lips on the left side of my mouth were considerably thinner and tighter than the right.D5 E6F5 G6 H6I54J6+I had atrophy on the left side of my tongueK6Sometimes, my TMJ will lock up on the left side, so I have to massage or stretch open my mouth to get it to loosen back up. I alos notice tenderness underneath my jaw if I press firmly. There is atrophy underneath my jaw. L6 M6N5O5P5Q5R6 Skin biopsies S6T5U5V5W59X60Topical steroid creams and ointments. Plaquenil.Y5 Z6[5 \6]5M^6DRheumatoid arthritis-I was told scleroderma is related to arthritis._5 `6 a6b5cDd6;I got sober! Everything seemed to fall apart after that ;-)e5 f6g6There is also the "ridge" from the bald spot on top/rear of my head to the left temple. That was what prompted one Doctor to realize the Coup de Sabre, it does truly feel as if there was a cut made. The scleroderma diagnosis was made by a Dermatologist at h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5j@6Lada Larovikova6Corso B. Aires, 2 6 6Mi6Italia6201246+39 335615665063356156650@tim.it~ 5@@ 6Female 6Right 6 Parry-Romberg 66Other.6%fossetina grande in guanccia sinistra<@@<@@!+? DD5 6Left6Lower5 6 65 6 65 6 6!6Green"6Green #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5 @6 A6B5 C6D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6I first showed symptoms when I was 10, in the form of purple-red patches on the skin of my face. It was two years before the doctors agreed on a diagnosis-localized scleroderma. However, eventually, they started calling it Parry Rhombergs Syndrome. I was  h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5j@6Leah Lefkovits63 blueberry hill rd6 Spring Valley 6NY 6USA6109776 845-426-0540 6~ 5 @ 6Female 6Right 6Romberg 66 Skin Changes 6<@<@!+? DD5 6Left6Lower5 6 65 6 65 6 6 !6Blue "6Blue #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5 @6 A6B5/C6&Just at the begining of here left sideD5 E6F5 G6 H6I5 J6K6She did have surgery, The doctor put in some tissue from here shoulder, But the doctor said she will need surgery again when she turns 12, Because then she will have grown more L6 M6N5O5P5Q58R6/don't no but i could recomend you to my doctor. S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6La mia malattia ancora non diagniosticata deffinitivamente. Sono russa e scoperto questa malattia da dottori russi, pero abito in Italia e non resco seguire una logica h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5j@6 Denise Kappel64158 Drummore Lane6 Cincinnati 6Ohio 6USA645245 66denise@atomicx.com~ 5A@ 6Female 6Right 6PFHA 6Romberg6 Skin Changes 6<@< @!+@ DD5 6Left 6Both5 6 65 6 65 6 6 !6Blue"6Other#6Blue with brown stripe$5C%6:had grey hairs since was child on both head and eye lashes&5 '5( )6*5 +6 ,6 -6 .6 /50515~ 259@!337@3 D2DM46DI can't think clearly. I feel nauseous. Everything sounds very loud. 56Left~ 6<@758595:5 ;6<5h=6_On left side under my eye, sometimes. It feels like someone is pulling a string out of my face. >6?5e@6\I have a very small mouth, and had to have wisdom teeth pulled so other teeth could come in. A6B5PC6GLeft side is smaller than right. Harder to close left side all the way.D5E6Thinner on left side.F5G6Vision is fine but I do have a brown spot on my eye that only the eye doctor can see when he looks in my eye. My left eye does not close all of the way. It sometimes gets dried out and I have to put medicine on it and wear an eye patch. H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5(X6I have had at least 6 surgeriesY5 Z6[5#\6cousin due to birth defect]5 ^6_5R`6Iwas taken out by forceps at birth and they scraped my face leaving a scar a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5k@6 Louise Smal 66 Cape Town 66 South Africa 68000 6 6Lsmal@pawc.wcape.gov.za~ 56@ 6Female 6Left 6 Parry-Romberg 6PFHA6 Skin Changes 6<3@<4@!+? DD56Right6Lower5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515~ 250@!333 D2D 46 56Left~ 6<@758595:5;6Dull throbbing pain usually. Sometimes get shooting pains throughout my skull. Usually accompanied by pain in my left eyeball, blurred vision, nauseau and a dizzy sensation. Very adverse to light and noise when I get these headaches. Makes me very irritab<5=6Starts on the left side of my face by my forehead and left eye. Moves over to the right side of my face (cheek and jaw). My eyeballs, skin and facial bones feel very tender and sore. Sometimes I get a tingling sensation in my face also. >6?5@6The teeth along the right side of my upper jaw have shifted inwards. My teeth get very sensitive and sometimes I cannot even chew on that side A6B5FC6=The right side of my upper lip is thinner than the left side.D5 E6F5G6I often have blurred vision - especially when I have facial pain or headaches. Cannot see very far. The pupil of my right eye is a different shape to that of my left eye. H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5R^6IMaybe - my father has angolosing spondolitis which affects all the joints_5 `6 a6b5c?FORCPESGd6>My mother believes it was the forceps but the doctors disagreee5 f6g6My left ear is also smaller than my right. Also, I have passed out many times between the ages of about 6 and 24. Mainly, when I would get hot or hear very loud music. The doctor ran tests and said that I had epileptic tendencies.h6I think this is great that you are researching this. It took many years and doctors before my family found out what it was. Even then, the doctor that diagnosed me had only remembered it from reading about it in a book. He did several inovative surgeries  i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5 k@6Narelle Dorothy Cox626 Sharon Crescent6Mountain Creek6 Queensland6 Australia6Q4557654447820!6hotelcharlie@bigpond.com~ 5I@ 6Female 6Right 6PFHA 66 Skin Changes@67Wasting of subcutaneous fat on right hand side of face.<I@<I@!+ DD56Right6Lower5 6 65 6 65 6 6!6Green"6Green #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5=6My pain is only minor, along the right jaw and cheek bones. It is not bad enough to require medication at this point, but is uncomfortable. >6?5^@6UI don't know, but don't think so. I think I have only had Rombergs for 6 - 12 months. A6B5SC6JMy top lip on the right hand side looks to have become marginally thinner.D5 E6F5}G6tAs I'm 50 this is a hard one. I have just had my reading glasses made stronger, but my long distance sight it great. H6I5mJ6dWas asked about my tongue by the specialist and of course have never bothered to look at it to know. K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5\`6SAs a child I can remember falling off swings and having to see a doctor. No surgery a6b5c%STRESSad6XWas going through a very stressful time when I first started getting the symptoms. Lymee5 f6g6I have an indentation (which has a bump behind it) on the middle of my skull. This gets tender sometimes and I have this tingling sensation on my skull. I also have a bald patch on the right hand side of my head. I have no eyelashes on the bottom lid of m h6i6I find it a relief to be able to describe my symptoms to someone who's really interested. Aside from the physical damage to my face it has affected me emotionally too. I am very shy and insecure, because I'm always aware that I'm different. It's not easy  j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5@k@6 Raymond Woolf611359 Haswell Dr.6Parker 6CO 6USA6801346 303-841-06666woolfing@aol.com~ 5E@ 6Male 6Right 6 Parry-Romberg 66 Skin Changes 6 <b~ <E@!+ DD56Right 6Both5 6Left 65 6Left 65 6Left 6Both!6Brown"6Brown #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5 =6 >6?5 @6 A6B5C6Right side weaknessD5,E6#Forehead weakness on the right sideF5sG6jdouble vision due to right eye not moveing properly. Also dryness and my eyelid does not shut all the way. H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6g6I have very annoying clicking noises in my jaws when I am chewing. My children always comment on them. My MRI showed several hyperintense foci in the periventricular deep white matter of each parietal lobe, which were nonspecific, but could represent focih6Have been diagnosed with Hashimotos - under-active thyroid this year. Have had a benign tumour in the right knee. Both shoulders have noticeable wasting, but I think this was due to having frozen shoulders some time back. Research indicates this is a chil i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5k@6georgina raper 68-14 jerome st canungra6 gold coast 6Qld6 Australia 66 07554343346boodlepip2002@.com.au~ 5:@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes 6 < <+5 6Left 6Both5 6 65 6 65 6 6!6Green"6Green #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253h46_renching ongoing head pain that lasts for a few hours.But as mysteriously as it appears it goes 56Both~ 6<@758595:5 ;6<5>=65left side it twiches I've ignored it most of the time >6?5 @6 A6B5C6left side, upper lip.D5@E67left eyebrow,missing a"patch" near the start of my eye.F5(G6left eye goes blurry sometimes. H6I5 J6K6dont like going near microwaves or mobile phones sometimes even computers when they are on.Ive always been sensitive to such things. L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5C^6:mother had menengitis when young had left back ear removed_5D`6;fell down stairs when i was very young on a concrete floor. a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5k@6 anton veugen 66 townsville 66 Australia 6 6&6antonandrobyn@optusnet.com.au~ 5A@ 6Male 6Right 6Romberg 66 Skin Changes 6<"@<&@!+@ DD56Right 6Both5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5( )6*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<51=6(occasionally, only when having headaches >6?5+@6"jaw out of line, sometime painfull A6B53C6*my lip on the right side is small in widthD5E6hair grows in a up wayF5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5R`6Iwhen they discovered the romberg's disease but they called it scleroderma a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5k@6Nina Sofia AbrahamssonG6>the mother Anna Karin answering the survey Linnankatu 55 h 2926turku 66Finland 66 02-2302687*6!anna-karin.abrahamsson@sydvast.fi~ 5(@ 6Female 6Right 6Romberg 66 Skin Changes 6<@<(@!+@ DD5 6Left6Lower5 6 65 6 65 6 6!6Green"6Green #6$5 %6&5 '5()6sorry my english isnt so good - but I would describe them like "grand Mal" but always just when she is going to sleep in or to wake up. I am not sure about if both sides of the body shakes, but i think both sides*5 +6Both ,6Both -65 .61 /50515~ 25@!333 D2D%46hard to describe for a child 56Both~ 6<@758595:5 ;6<5 =6 >6?5 @6 A6B5 C6D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5BZ69we dont live with nina sofias father so we cant be sure[5 \6]5 ^6_5 `6 a6b5c4INJURY$d6falling and hurting my heade5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5~ 5k@6Yuxi Fu.6%195 Life Sciences Addition, MCB #32006Berkeley 6CA 6USA6 94720-3200 6"6yxfu@uclink4.berkeley.edu~ 5@@ 6Male 6Right 6PFHA 66 Skin Changes 6jk<(@<(@!+ DD5 6Left6Lower5 6 65 6 65 6 6!6Brown"6Brown #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515~ 25(@!333 D2D 46 56Both~ 6<@758595:5 ;6<5 =6 >6?5 @6 A6B5 C6D5 E6F5 G6 H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6zg6qi dont have any conserns - but do you know if the epilepsy also is progessive, or can it be treaten by medicine? h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5EOOOOOOOOEOOOOOOO----POOPOOPOOPOOOOOPOPEEOPOOOOEPPEEOOQPPPPRPOOPOOPOPOPOOPOOOPPPPOOPPPPRPOPOPOPOOPPc d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5#i@ %BX)*Focal Seizures+LuMEDIAN# .@@ % B' d@ % D AZ' g@ % D AZ MEDIAN#.$@ %B#.3@ %B#. %B=Right*X@%RightAZ Arm  Body  Leg" #Hair)$I@%$$TRUEAZ%Epilepsy$&7@$%&&AZ'#( @& %((B)$*(@(%**AZ+/0Migraine$1Z@*%11AZ2MEDIAN#3.@1 %33B45MEDIAN#6.@3 %66B7:; Facial Pain$<W@6%<<AZ=>Teeth$?Y@<%??AZ@ ALip$B@\@?%BBAZCEyebrow$DQ@B%DDAZEVision$FW@D%FFAZ G'H$II@F%IIAZJM$N_@I%NNAZ$OW@N%OOAZ$PE@O%PPAZ$Q?P%QQAZ RS$T,@Q%TTAZ$U@T%UUAZ$V@U%VVAZ$WZ@V%WWAZXL$Y@W%YYAZZ$[0@Y%[[AZ\$]E@[%]]AZ^$_M@]%__AZ `a$bR@_%bbAZ cd$e@b%eeAZ USA'`@$%D3AZ # @ %  ' 5@ % Do AZ #.fffff@ %#.@ %#.333 % =Left)Y@%LeftAZ$3@%AZ $;@%AZ $4@%AZ" #%!$'818?& D$D %%!&'Ѹ?1 D&D'*+Right*,@%,,RightAZ -/ 0%!1'н݋?< D1D2'5'6X@6%66>0AZ7: ;%!<'YթX?? D%!?'??B D?D@ A%!B'q9?D DBD C%!D'*Vbu*?F DDDE!F']ڕ?I DFD GH!I'؟ ?T DIDJM NCT OMRI PEEGQBiopsy RSTSteroids UAzoV PenicillamineWSurgeryXLY RelativesZ[ Rel Epilepsy\] Rel Medical^_ Head Ijury `abTrigger cd eLyme Australia'3@%D AZ  MEAN1 @@ % % B  MEAN1'@%%B1w ~G3@%%B1A%%B !'{? DD !'ܐ ? DD !'? DD* +Left),@,%,,LeftAZT-S!T'|{?U DTD!U'߁?V DUD!V'?W DVD!W'0= ӳ?_ DWDXL^!_'!y? D_D`eCanada'(@%DAZ  MIN# .@ % B ( 'Ѹ?D D D   MIN#. %B#. %B#. %B=%Right!BY? DDLe UK'*@%D+AZ  MAX# .P@ % B  MAX#.I@ %B#.J@ %B#. %B=%Left!B?? DD5 contralateral 5 contralateral 5 contralateral(/0Number lateralised~ 1M@!2oeCj?, D1D1 345Almost every day%6 @6%66AZd7Le NZ'@%D AZ   Parry Romberg' U@ % D AZ2 ? %  Parry-RombergAZ2@e% Parry-RombergAZH/0 Ipsilateral~ 1J@!2=?2 D1D1 345Every 1-3 days%6(@6%66AZd7Le South Africa'@%D'AZ  /0-5' @ % <6AZ  Romberg' Q@ % Dx AZ, @ % RombergAZ,@%RombergAZ  /0-5'J@%<6AZ)J@%<1.1AZ /1Upper'B@%DAZCy 5? '/?./0 Contralateral~ 1@ 245 Every week%6@6%66AZd7LeFrance'@%DAZ  /6-10/ &@ % <11AZD   En coup de sabre' 2@ % D AZ5 @ % En coup de sabreAZ5"@%En coup de sabreAZ  /6-10/H@%<11AZD05@%<2.1AZD /2Lower'Q@%DAZAny extrafacial~ C@245 Every Month%6A@6%66AZd7LeIreland'@%DAZ /11-158 $@ "% <16AZ%    scleroderma' @ % D AZ7 ? !% linear sclerodermaAZ7@!%linear sclerodermaAZ /11-158E@"%<16AZ%93@#%<3.1AZ% /3 Both'T@%DAZ!B{? DD245Every 3 Months%6?6%66AZd7LeTurkey'?%DAZ /16-208 1@ "% <21AZ%   Facial Hemiatrophy' <@ % D AZ) &@ % PFHAAZ)3@%PFHAAZ /16-208<@"%<21AZ%9&@#%<4.1AZ% /4D45Once or Twice a Year%69@6%66AZd7LeSweden'@%DAZ /21-258 6@ "% <26AZ%   Morphoea-  % MorphoeaAZ- ? % MorphoeaAZ-@%MorphoeaAZ /21-258(@"%<26AZ%9 @#%<5.1AZ% /5 Upper+Both5'^Cy 5?6DDDDD@45Less than Once a Year%6@6%66AZd7Le/26-308 6@ "% <31AZ%  /26-308 @"%<31AZ%9 @#%<6.1AZ% /6D45They have stopped now%6$@6%66AZd7Le#h@ % /31-358 C@ "% <36AZ%    % /31-358@"%<36AZ%9"@#%<7.1AZ% /7F5#6X@ %66 d7Le/36-408 5@ "% <41AZ%    Parry Romberg' @W@ D D D! ' ݋н? D D /36-408?"%<41AZ%9@#%<8.1AZ% /8Le41-458 1@"% <46AZ%   Romberg' @T@ D D D! 'JٚI? D D 41-458@"%<46AZ%9@#%<9.1AZ% /9Le  En coup de sabre' @@ D D D! '?? D D 46-50)? %>45AZ:@$%<10.1AZ% /10LeDl E . { I `  Q>(2PcLhD71+vT0vvvvvvvvv$vv$v$vv$vv$vvv@v@Gv@vv@vwvvvGvvGvv   scleroderma'  @ D D D! '?? D D:@$%<11.1AZ% /11  Facial Hemiatrophy' M@ D D D! '!y? D D  0-15,5wL ? DDD :@$%<12.1AZ% /12  Morphoea' @ D D D! '߁? D D:@$%<13.1AZ% 013Total# c@ %B 0 'Isolated coup de sabre/ linear/morphoea~ &@! 'y!y? D D:@$%<14.1AZ%2,@ D  Mixed! 5@ D D ! '9q9? D D:@$%<15.1AZ%2.@ D  with 'without:@$%<16.1AZ%20@ D " En coup or sclero overlap 2@1&@ !88? D D :$%<17.1AZ%21@ D  ' PRs with coupW??2 D :@$%<18.1AZ%22@ D&':$%<19.1AZ%23@ D&':@$%<20.1AZ%24@ D&':@$%<21.1AZ%25@ D&':@$%<22.1AZ%26@ D&':$%<23.1AZ%27@ D&':$%<24.1AZ%28@ D&':@$%<25.1AZ%29@ D&':@$%<30.1AZ%226-30.': @$%<36.1AZ%131-35Lu.':@$%<41.1AZ%136-41LuExcludedLu~ #a@$ Evelyn Dayman$31 Congewai Street$Aberdare$New South Wales$ Australia $2325$ 02 49909149$everex@optusnet.com.au~ #K@ $Female $Right $ $&$Hemiparkinsonism Hemi Atrophy$Other $ $ $49 $49$% $ $%$Right $%$Right $%$Right $!$Hazel"$Hazel #$$% %$&% '#(# )$*% +$Both ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6$7%8%9%:% ;&<% =$ >$?% @$ A$B% C$D% E$F%nG$eI need to use daily Liquifilm Tears as I dont blink and my eyes get very dry if I dont use the drops. H$I%gJ$^I stumble over the words that I am trying to get out,it feels like I lose control of my tongue K$ L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[%\$ M y neice]% ^$_% `$ a$b%c% d$e% f$g&I was diagnosed in December 1995 but the doctors that I have been seeing seem to think that It was mis-diagnosed back 1989 as Repitive Strain Injury. Back then the symptoms were pain in my right wrist/arm unable to carry briefcase in hand, pick up coffee h&My specialist Dr V Fung Neurology Department - Westmead Hospital - Sydney, New South Wales, Australia 2145 has told us that the general thinking is that it is possibility linked to a birth trauma- I was born with a heart condition - "Hole in the heart".i&I along with my husband have just finished taking part in a research programme with Dr Fung at the Westmead Hospital and have also been asked to take part in a world-wide Drug research programme which is to start in Feb/Mar 2002, the reason being to take  j$k%l%m% n$o% p$q%ru~ #Y@$ Celia Pidoux $ $ $$France $ $&$chantal.pidoux@mairie-lyon.fr # $Female $ $ $ $ $ $ $ $ $$% $ $% $ $% $ $% $ $ !$ "$ #$$% %$&% '#(# )$*% +$ ,$ -$ .$ /#0%1% 2#3# 4$ 5$ 6$7%8%9%:% ;&<% =$ >$?% @$ A$B% C$D% E$F% G$ H$I% J$ K$ L$ M&N%O%P%Q% R$ S$T%U%V%W% X&Y% Z$[% \$]% ^$_% `$ a$b%c% d$e% f$g&Clia est ne le 19 octobre 1978 l'Hpital Gnral de la Marine El Ferrol, en Espagne. Ds sa naissance il a t constat une plaie ronde, de la taille d'une pice de 20 centimes, sur le sommet de son crne, ainsi que plusieurs boules sur ses jamh&1: Neuropediatrics 1995 Dec;26(6):306-9 Related Articles, Books, LinkOut Progressive facial hemiatrophy with multiple benign tumors and hamartomas. Derex L, Isnard H, Revol M. Service d'Explorations Neurologiques, Centre Hospitalier Lyon-Sud, i& j$k%l%m% n$o% p$q%ru~ 5`e@6metin 66istanbul 66Turkey 6 6$6thalassictribe@netscape.net~ 5E@ 6Male 6Right 6A 68I havent been to Doc.yet ! yes strange though it looks.. 6r6iI dont know whether it's athrophy or hemihypertropy,but one side of my body either shrinks or overgrows.. 6 < <5 6Left6Upper5 6Left 65 6Left 65 6 6!6Brown"6Brown #6$5 %6&5 '5 (6)*5 +6 ,6 -6 .6 /50515 253 46 56 6<758595:5 ;6<5B=69maybe on my left side in the past but realy insignificant >6?5-@6$my teeth are deformed and assymetric A6B5 C6D5$E6only slightly,insignificantF5 G6 H6I5 J6K6palatal deformity -assimetry ,when I was a kid I had an ortodontic treatment (in vain)also some degree of scoliosis.my left lover arm 1.5cm. shorter,lover arm also but I cannot measure.all in all it's 2 or 2.5cm shorter than the other. L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5 Gill ChapmanLu~ 5h@6Georgina Raper6 8 Jerome St6Canungra 66 Australia 642756 0755434334 6~ 5:@ 6Female 6Right 6 Parry-Romberg 66 Skin Changes+6"a 'dent' down center of forehead.7 6<@<1@!+$@ DD5 6Left 6Both5 6 65 6 65 6 6!6Green"6Green #6$5L%6CI have bald spots on the back left side of head and the center head&5 '5( )6*5 +6 ,6 -6 .6 /50515~ 25@!333 D2D 46 56Both~ 6<@758595:5u;6lCannot go near microwaves when on it only makes it worse same goes for mibile phones and sometimes computers<5o=6fIt allways happens on the lefthand side it 'tingles' with the sensation going all the way to my scalp. >6?5 @6 A6B5+C6"A slight curl on my upper left lipD5%E6Missing half my left eyebrowF5*G6!Left eye going blurry I get older H6I5 J6 K6 L6 M6N5O5P5Q5 R6 S6T5U5V5W5 X6Y5 Z6[5 \6]5 ^6_5 `6 a6b5c d6e5 f6 g6 h6 i6 j6k5l5m5 n6o5 p6q5r5s5t5u5,Lu,Lu,Lu++-Lu++-Lu++-Lu++-Lu++-LuD<l1+zLL " vT0vvvvvvvv v$ v v$ v$ vv$vv$vvvvGvvvvwvvvGvvGvv ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++- ++-Dl vT0!v"v#v$v%v&v'v(v)v$*v+v$,v$-v.v$/v0v$1v2v3v4vG5v6v7v8vw9v:v;vG<v=vG>v?v ++- !++- "++- #++- $++- %++- &++- '++- (++- )++- *++- +++- ,++- -++- .++- /++- 0++- 1++- 2++- 3++- 4++- 5++- 6++- 7++- 8++- 9++- :++- ;++- <++- =++- >++- ?++-Dl@vT0AvBvCvDvEvFvGvHvIv$JvKv$Lv$MvNv$OvPv$QvRvSvTvGUvVvWvXvwYvZv[vG\v]vG^v_v @++- A++- B++- C++- D++- E++- F++- G++- H++- I++- J++- K++- L++- M++- N++- O++- P++- Q++- R++- S++- T++- U++- V++- W++- X++- Y++- Z++- [++- \++- ]++- ^++- _++-Dl`vT0avbvcvdvevfvgvhviv$jvkv$lv$mvnv$ovpv$qvrvsvtvGuvvvwvxvwyvzv{vG|v}vG~vv `++- a++- b++- c++- d++- e++- f++- g++- h++- i++- j++- k++- l++- m++- n++- o++- p++- q++- r++- s++- t++- u++- v++- w++- x++- y++- z++- {++- |++- }++- ~++- ++-DlvT0vvv ++- ++- ++- ++- <,P (  x  6PXPP?  I]4@P $  :{wH/R> R  <JSTONE: Roght< 2. xx  6XPP?  ]4@P$ H7tI'Ea/X <JSTONE: Left handed< 2Pxx  6XPP? UrY]4@$ gġXMg)X <JSTONE: belongs to one below< ,q xp  6NMM? ]`$  "??3` ! ` ! ` !` !PH`0(   f3d23 M NM4  3QQ ;Qi ;Q3_4E4D$% M 3O& Q4$% M 3O& Q4FAl} e3OS7g 3 b#M43*#M! M4%  AM3O&Q  Age'4523   f  d@43" 44% VLM03O&Q <Parry Romberg - Age of Onset'44 eee xp  6NMM?/]`$  "??3` !` !` !` !`f3d23 M NM4 3QQ ;Qi ;Q3_4E4D$% M 3O&Q4$% M 3O&Q4FA3OA#! 3 b#M43*#M! M4%  AM 3O +&Q Years'4523   f  d@43" 44% LM03O&Q H"Parry Romberg - Delay to Diagnosis'44eee xp  6NMM?49B1]`X$  "X??3` !` !` !` !PHp 0(   @f3d23 M NM4 3QQ ;66Q ;55Q3_4E4D $% M 3O&Q4$% M 3O&Q4FAsj 3OJj y 3 b#M43*#M! M4% # ,5M3Os&Q .Number of Respondents'4523   f  d@43" 44% M,IM03Om&Q .Frequency of Migraine'44eee xx  68XPP?  ]4@8 $ c*Mڴ&BqCX <jstone: number of female< .s xx   6XPP? nR]4 @ $ 7FJkͱX <jstone: duplicate data< 1~v   <NMM? ] `P!$  MnEpson Stylus COLOR 740 ESC/P 2C odhhLetter0DINU"0`ẇ `OSPEAAq"dhh??3` !7` !8` !9` !:h f3d23 M NM4  3QQ ; Qi ;Q3_4E4D$% M 3O&:Q4$% M 3O&9Q4FA\ 3O " 3 b#M43*#M! M4%  FM3O&8Q  Age'4523   f  d@43" 44% 'NH M03O &7Q H"Parry Romberg - Age of respondents'44 eee ~v   <NMM?] `7$  MnEpson Stylus COLOR 740 ESC/P 2C odhhLetter0DINU"0`ẇ `OSPEAAq"dhh??3` !;` !<` !=` &$B 33dZ23 M NM4  3QQ ;Qi ;Q3_4E4D$% M 3O&=Q4$% M 3O&<Q4FA 3O  3 b#M43*#M4%  FM3O&;Q ,Age of onset (years)'4% O"MZ3O&BQ .Number of respondents'4523   f  d@43" 444 eee   VJSTONE jstone JSTONE JSTONE jstone> @   dMbP?_*+%,&A Page &P"P??U} } #} 0} U} } q} U} %} -} q} } U } } } } } } } } }  } q} U}  } q} } q }  } } q }  } q} !!o} ""q } ##} $$} %%} &&q} ''} ((} )) } **U} ++U} ,,} --q} ..} // } 00} 11U } 22q} 33} 44} 55} 66U} 77} 88 } 99} ::q} ;;} <<} ==} >>} ??} AA} BB} CC} DD} EE} FF} GG} HH} II } JJ} KL} MM } NNq} OOU} PP} QQU } RR } SS} TT} UU} VVq} WW} XXUS} YYq} ZZ} [[U } \\U} ]]qc} ^^} __} `` } aa{} bb} ccq} dd} eeUV} ff#} ghq} iiUa} jj } kk$} llq} mnU } oo} ppqq,T0@q,@q,@q,@q,@q,@q,@q,@q,@ q,@$ q,@ q,$@ q,@$ q,@q,$@q,@q,$@q,@q,@q,@q,@Gq,@q,@q,@q,w@q,@q,@q,@Gq,@q,@Gq,@q,@88888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888888p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p 9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p 9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p 9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p 9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p 9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pD l q,T0@!q,@"q,@#q,@$q,@%q,@&q,@'q,@(q,@)q,@$*q,@+q,$@,q,@$-q,@.q,$@/q,@0q,$@1q,@2q,@3q,@4q,@G5q,@6q,@7q,@8q,w@9q,@:q,@;q,@G<q,@=q,@G>q,@?q,@ 9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p!9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p"9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p#9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p$9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p%9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p&9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p'9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p(9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p)9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p*9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p+9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p,9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p-9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p.9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p/9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p09::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p19::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p29::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p39::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p49::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p59::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p69::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p79::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p89::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p99::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p:9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p;9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p<9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p=9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p>9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p?9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pD l@q,T0@Aq,@Bq,@Cq,@Dq,@Eq,@Fq,@Gq,@Hq,@Iq,@$Jq,@Kq,$@Lq,@$Mq,@Nq,$@Oq,@Pq,$@Qq,@Rq,@Sq,@Tq,@GUq,@Vq,@Wq,@Xq,w@Yq,@Zq,@[q,@G\q,@]q,@G^q,@_q,@@9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pA9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pB9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pC9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pD9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pE9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pF9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pG9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pH9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pI9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pJ9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pK9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pL9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pM9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999pN9::::::::9:::::::::9::9::9::9:::::9:99:9::::9999:::9999:9::9::9:9:9::9::::9999::9999:9:9:9:9::9:9:::::999:9:99999p~ O9@T@O:Adrienne Wilson*O:!51 Kiwi Esplanade, Mangere BridgeO:Auckland O:O: New Zealand O: O:O:hooloovoo_@hotmail.com~ O 92@O :FemaleO :RightO : Parry-Romberg O :O: Skin Changes+O:"A 'crease' on my forehead, atrophy O: O:9 O:11O9 O:Left O:BothO9 O: O:O9 O: O:O9 O: O:O:HazelO :Hazel O!:O"9O#:xa tiny patch (about the size of a 5 cent coin is blonde and frizzy, while the rest of my hair is dark brown and straightO$9 O%9 O&:O'9 O(: O): O*: O+: O,9O-9O.9~ O/9"@ O0: O1: O2:4O39O49O59O69VO7:MSensitivity to light and sound, visual disturbances, trouble speaking, nauseaO89CO9::On the left side of face and head, doctors havn't named it O::O;9;O<:2Not sure, but I had braces on my teeth for 3 years O=:O>9HO?:?left side of lips on top and bottom are thinner than right sideO@9AOA:8hair doesn't grow as fast or as thick on my left eyebrowOB9]OC:Tusually only during migraine, but my left eye gets tired more quickly than the right OD:OE9 OF: OG: OH: OI:OJ9OK9OL9OM9 ON: OO:OP9OQ9OR9OS9 OT:OU9 OV:OW9 OX:OY9 OZ:O[9 O\: O]:O^9aO_:XHad tonsels removed, complications during surgery, happened around the time of PRS onsetO`9 Oa: Ob: Oc: Od: Oe:Of9Og9Oh9 Oi:Oj9 Ok:Ol9Om9On9Oo9Op9~ P9T@P: Mary ToledoP:29327 Cordell CourtP:RandolphP: Minnesota P:USAP:55065P: 507-645-7795P:mary.toledo@smead.com~ P 9I@P :FemaleP :Right P :PFHAP :Romberg's DiseaseP: Skin Changes P: P: P:3 P:5P9P:Right P:P9 P: P:P9 P: P:P9 P: P: P:Blue P :Blue P!:P"9 P#:P$9 P%9 P&:P'9 P(: P): P*: P+: P,9P-9P.9 P/9 P0: P1: P2:P39P49P59P69 P7:P89 P9: P::P;9P<:My upper jaw was pulled up on the right side. My teeth were pulled to the right. All teeth on bottom right are loose, because not enough bone for the smaller root to set in`P=:WI had surgery to correct my upper jaw and straighten my teeth, with the help of braces.P>97P?:.Lips are thinner on the right. Also pulled up.P@9XPA:OBecause my eye socket is smaller on the right, my right eyebrow is pulled down.PB9PC:I don't have very good sight, but I see better out of the eye on my affected side than the other, but I did have surgery on my right eye where the doctor was trying to pull the eyeball out more, stretching the optical nerve (tried twice)PD:so he could build the bone up around the eye. Because of that surgery, I can no longer move that eyeball, or blink, which causes me to have to use salve to keep it from drying out, so I don't use it when I have my glasses on.PE9 PF: PG: PH: PI:PJ9PK9PL9PM9 PN: PO:PP9PQ9PR9PS9PT:Before diagnosed, is was sent to a chiropractor. I had fallen and hit my chin just before showing signs of the disease, and my doctor thought I might have injured a nerve or something which was causing the difference.PU9 PV:PW9 PX:PY9 PZ:P[9 P\: P]:P^9zP_:qAs mentioned before, I fell down the stairs and hit my chin. It was shortly after that signs of Romberg's showed.P`9 Pa:Pb:My Romberg's was active for only a very short time, but was very aggressive. I had my first reconstructive surgery when I was 7 years old. Signs showed when I was three, but damage was very evident by the time I started school at five years old. Seemed to Pc: Pd: Pe:Pf9Pg9Ph9 Pi:Pj9 Pk:Pl9Pm9Pn9Po9Pp9~ Q9T@Q:Natasha GeddieQ:703 Downing DriveQ: RichardsonQ:Texas Q:USAQ:75080Q:(972) 783-9512Q:assistforu@aol.com~ Q 9C@Q :FemaleQ :RightQ :En coup de sabreQ :Parry-Romberg SyndromeQ: Skin Changes Q: Q: Q:14 Q:21Q9 Q:LeftQ:UpperQ9 Q: Q:Q9 Q: Q:Q9 Q: Q:Q:BrownQ :Brown Q!:Q"9 Q#:Q$9 Q%9 Q&:Q'9 Q(: Q): Q*: Q+: Q,9Q-9Q.9~ Q/9.@ Q0: Q1:Both Q2:8Q39Q49Q59Q69Q7: Over the years, headaches have come and go. Since surgery 4/13/01, the pain has decreased significantly. I have been treated for migraines since my early 20s. In Nov/December of last year, my forehead and the crown of my head began to hurt a lot, and thQ89Q9:Doctors keep telling me they "can't understand" why my forehead hurts! I did have a neurologist tell me earlier this year that I have a severe case of TMJ (which was confirmed by an MRI of my jaw) which he believed was the only cause of the headaches. Q::Q;9 Q<: Q=:Q>9 Q?:Q@9 QA:QB9 QC: QD:QE9 QF: QG: QH: QI:QJ9QK9QL9QM9YQN:PI had a 3-D CT scan done of my head; and MRI of my brain, and an MRI for my jaw. QO:QP9QQ9QR9QS9QT:I had a Parry-cranial flap procedure; the surgeons removed tissue from the top of my head, and transplanted it into my forehead, and excised the scar on my face. There is now a single line scar (that is still healing, slowly), and the caved-in appearance QU9 QV:QW9 QX:QY9 QZ:Q[9aQ\:XI suffered numerous head injuries as a child, which required stitches a couple of times. Q]:Q^9Q_:I was under a very significant amount of stress, working out of state on a trial, at the time my forehead and head began to hurt and burn (this was in Nov. of 2000). When I was 14 and it initially appeared, I was also under extremely emotional stress.Q`9 Qa:Qb:TMJ - my neurologist advises my TMJ is a result of PRS (Parry-Romberg Syndrome). In the 1980s, I was the founder of the first Texas chapter of the United Scleroderma Foundation (USF). At that time, there were very few people within the organization that "Qc:At an early age I was labeled a child prodigy because I started playing music at the age of 3. During the first decade of my life, I was a victim of severe child abuse; the State of Texas permanently removed me from my adoptive parent's home when I was 11Qd:I would like to know if others suffered a single (or more) head injury(ies) as a child. I have read on the NORD web-site that this is one common factor among individuals with PRS. I am in the process of starting a non-profit organization with a lady in NY Qe:Qf9Qg9Qh9 Qi:Qj9 Qk:Ql9Qm9Qn9Qo9Qp9~ R9U@R: Hyunjin Lee%R:Donamdong hanjinAPT 201-1505R:seoul R:R:KoreaR:136060R:82-2-6221-2053R:hyunjin@ksri.org~ R 9;@R :FemaleR :RightR :Romberg R :R: Skin Changes R: R: R:24 R:27R9R:RightR:LowerR9 R: R:R9 R: R:R9 R: R:R:HazelR :Hazel R!:R"9 R#:R$9 R%9 R&:R'9 R(: R): R*: R+: R,9R-9R.9~ R/98@5R0:,Doctors whom I met didn't say about headache R1:Both R2:4R39R49R59R69R7: No symptomsR89 R9: R::R;9 R<: R=:R>9 R?:R@9 RA:RB9 RC: RD:RE9 RF: RG: RH: RI:RJ9RK9RL9RM9 RN: RO:RP9RQ9RR9RS9 RT:RU9 RV:RW9 RX:RY9 RZ:R[9 R\: R]:R^9 R_:R`9 Ra: Rb: Rc: Rd: Re:Rf9Rg9Rh9 Ri:Rj9 Rk:Rl9Rm9Rn9Ro9Rp9~ S9@U@S:Petra R. MedinaS:6647 So. Clarkson St.S: CentennialS:Colorado S:USAS:80121S: 303-730-7399S:prmedina@hotmail.com~ S 9M@S :FemaleS :RightS : Parry-Romberg S :S: Skin ChangesS:dark mark down the center of my face from my forehead to my chin and right half of my tongue is smaller, teeth on right side were crammed together when I was a child, wore braces S: S:7 S:42S9S:Right S:BothS9 S: S:S9 S: S:S9 S: S:S:BrownS :Brown S!:S"9 S#:S$9 S%9 S&:S'9 S(: S): S*: S+: S,9S-9S.9 S/9 S0: S1: S2:S39S49S59S69 S7:S89 S9: S::S;9S<:the teeth on my right side were crooked and on top of each other, have very little bone left to hold the teeth in, have upper dentures, lower right side no molars left plus 3 or 4 others, gums bad,OS=:Fhad to have gum surgery in 1977 on lower, couldn't top, but lost teethS>9S?:right side smallerS@9 SA:SB9gSC:^right eye is lower but have corrective glasses to raise sight up and focus both eyes together. SD:SE9%SF:right side of tongue smaller.SG:%lower eyelashes missing on right side SH: SI:SJ9SK9SL9SM9 SN: SO:SP9SQ9SR9SS9 ST:SU9 SV:SW9 SX:SY9 SZ:S[9 S\: S]:S^9S_:maybe-I was caught in a snow blizzard because I missed my ride and my parents told me that they thought that was what caused my face to be that way. I don't think they or any doctor knew if they took me at allS`9 Sa: Sb: Sc: Sd: Se:Sf9Sg9Sh9 Si:Sj9 Sk:Sl9Sm9Sn9So9Sp9~ T9U@T:Craig MitchellT: PO Box 3246T: WestbrookT:NatalT: South Africa T:4400T:+27 83 784 1005T:for_piglet@hotmail.com~ T 9:@ T :Male T :LeftT :Romberg T :T: Skin ChangesiT:`My top lip on the left was discolored and there was visibly less tissue there than on the right. T: T:9 T:12T9 T:LeftT:LowerT9 T: T:T9 T: T:T9 T: T:T:HazelT :Hazel T!:T"9 T#:T$9 T%9 T&:T'9 T(: T): T*: T+: T,9T-9T.9 T/9 T0: T1: T2:T39T49T59T69 T7:T89T9:I occasionally have spasms in my neck on the left side which causes the gland behind the ear to inflame and is very painfull. It usually only lasts a few seconds. My left ear is also very sensitive and the slightest bump can be very painfull. T::T;9 T<: T=:T>9MT?:DThinner lip on the top left side and no facial hair will grow there.T@9 TA:TB9QTC:HNot so much my vision but my left eye is slightly lower on the left side TD:TE9 TF:BTG:9My left ear is noticably smaller with little soft tissue. TH: TI:TJ9TK9TL9TM9 TN: TO:TP9TQ9TR9TS9rTT:iHave had large fatty tissue taken from my back on the left side and grafted from within to my left check.TU9 TV:TW9 TX:TY9 TZ:T[9 T\: T]:T^9 T_:T`9 Ta: Tb: Tc: Td: Te:Tf9Tg9Th9 Ti:Tj9 Tk:Tl9Tm9Tn9To9Tp9~ U9U@ U:JamiU: PO Box 4037U: MorgantonU:North Carolina U:USAU:28655U: 828-584-9956)U: my_prescious_izzybelle@yahoo.com~ U 92@U :FemaleU :RightU : Parry-Romberg'U :Scleroderma/Linear SclerodermaU: Skin Changes U: U: U:5 U:7.5U9U:Right U:U9U:Right U:U9U:Right U:U9U:Right U: U:Blue U :Blue U!:U"9 U#:U$9 U%9 U&:U'9 U(: U): U*: U+: U,9U-9U.9 U/9 U0: U1: U2:U39U49U59U69 U7:U89 U9: U::U;9sU<:jMy teeth/gums are in fair condition since I have had this disease. But I am in the process of fixing that. U=:U>9[U?:RMy right side of my lip is smaller than my left. My smile looks crooked sometimes.U@9 UA:UB95UC:,But I have had glasses since I was 10yrs old UD:UE9@UF:7My right side of my tongue is smaller than my left sideUG:I have diabetes, Polycystic ovarian syndrome and scleroderma or parry rombergs. Very confusing...I have also had hypertension since the age of 5-6 yrs old. UH: UI:UJ9UK9UL9UM9NUN:EI had a biopsy of my right arm.....it showed scleroderma at age 6yrs. UO:UP9UQ9UR9US9(UT:Nothing...but physical therapy.UU9 UV:UW9 UX:UY9 UZ:U[9 U\: U]:U^9 U_:U`9 Ua: Ub: Uc: Ud: Ue:Uf9Ug9Uh9 Ui:Uj9 Uk:Ul9Um9Un9Uo9Up9~ V9V@V:Rose M. GoodmanV: 136 Levo RoadV:TroutmanV:North Carolina V:USAV:28166V: 704-799-8251$V:rosebudgoodman@netscape.net~ V 9D@V :FemaleV :RightV : Parry-RombergLV :Cthe 'en coup de sabre' as the line bewteen normal and diseased areaV: Skin ChangesAV:8A dark circle on my neck that simply would not wash off. V: V:13 V:13V9V:RightV:LowerV9 V: V:V9 V: V:V9 V: V:V:BrownV :Brown V!:V"9IV#:@a blonde streak on the back right side - but not very noticeableV$9 V%9 V&:V'9 V(: V): V*: V+: V,9V-9V.9 V/9 V0: V1: V2:V39V49V59V69 V7:V89V9:It's never been great enough for me to discuss with the doctors. But it is a tightening of the muscles in the afflicted area which is my right chin/cheek.V::yI am told by my plastic surgeon that my case is the mildest that he has seen (he has several patients with this disease.)V;9V<:You can clearly see a dip in my jaw bone in xrays. My lower jaw is smaller than my top jaw so I have had teeth pulled from the top and have worn braces for the past two years V=:V>9GV?:>I have thin lips but it is even thinner in the afflicted area.V@9 VA:VB9 VC: VD:VE9 VF: VG: VH: VI:VJ9VK9VL9VM9 VN: VO:VP9VQ9VR9VS9 VT:VU9 VV:VW9 VX:VY9 VZ:V[9 V\: V]:V^9 V_:V`9 Va:Vb:The discoloration that began on my neck covers most of the right side of my neck and continues up to the underside of my right ear. I can only wear special makeup (for birthmarks) as regular makeup will not adhere to the skin. I have had 3 fat grafts (rem Vc:^Vd:UI grew up in CT and NY but met a girl here in NC about my same age with this desease. Ve:Vf9Vg9Vh9 Vi:Vj9 Vk:Vl9Vm9Vn9Vo9Vp9~ W9@V@W:Melissa Walbert W:W: Bowling GreenW:Kentucky W:USA W: W:;W:2walberthouse@earthlink.net: melissa_walbert@hotma~ W 9>@W :FemaleW :RightW : Parry-Romberg W :W: Skin Changes5W:,bluish bruise like areas on my nose at age 3 W: W:3 W:29W9 W:Left W:BothW9 W: W:W9 W: W:W9 W: W:W:HazelW :Hazel W!:W"9 W#:W$9 W%9 W&:W'9 W(: W): W*: W+: W,9W-9W.9~ W/93@OW0:Fbasically classic migraine: very sensitive to sound and light, intense W1:Both W2:3W39W49W59W69W7:extreme fatigueW89 W9: W::W;99W<:0teeth don'y touch in places on the affected side W=:W>9!W?:top left lip disappearedW@9 WA:WB9 WC: WD:WE9 WF: WG: WH: WI:WJ9WK9WL9WM9 WN: WO:WP9WQ9WR9WS9 WT:WU9 WV:WW9 WX:WY9 WZ:W[9 W\: W]:W^9W_:My Dad said that when I was 2 1/2 I was hit on the nose and cut by a rusty peice of metal while playing, a few months later the discoloration began.W`9 Wa: Wb: Wc: Wd: We:Wf9Wg9Wh9 Wi:Wj9 Wk:Wl9Wm9Wn9Wo9Wp9~ X9V@X:Beth McAllister X:X: West BaldwinX:Maine X:USAX:04091 X:X:stella@psouth.net~ X 9$@X :FemaleX :RightX :Romberg X :X: Skin Changes X: X: X:3 X:9X9X:Right X:BothX9 X: X:X9 X: X:X9 X: X:X:HazelX :Hazel X!:X"90X#:'Bald spot on right side of head, on topX$9 X%9 X&:X'9 X(: X): X*: X+: X,9X-9X.9 X/9 X0: X1: X2:X39X49X59X69 X7:X89 X9: X::X;95X<:,The teeth on the right are much more crooked X=:X>9 X?:X@9 XA:XB9 XC: XD:XE9 XF:XG:Beth's chin was the first obvious sign. People often ask her "why she has two chins." Also the side of her face, beside her eye (right side) is very much indented.oXH:fHer nose has an obvious line down the middle and the right nostril is very much smaller than the left. XI:XJ9XK9XL9XM9 XN: XO:XP9XQ9XR9XS9 XT:XU9 XV:XW9 XX:XY9 XZ:X[9aX\:XWhen she was two she fell and split her forehead open, requiring stitches above her eye. X]:X^9iX_:`She was diagnosed with a small patch of scleroderma beside her right eye somewhere around age 3.X`9 Xa: Xb: Xc: Xd: Xe:Xf9Xg9Xh9 Xi:Xj9 Xk:Xl9Xm9Xn9Xo9Xp9~ Y9V@Y:D.Garvin Y: Y: Y:Y:Canada Y: Y:Y:bulldog@sympatico.ca~ Y 9D@Y :FemaleY :RightY :Romberg Y :Y: Skin Changes Y: Y: Y:12 Y:28Y9Y:Right Y:Y9 Y: Y:Y9 Y: Y:Y9 Y: Y:Y:HazelY :Hazel Y!:Y"9 Y#:Y$9 Y%9 Y&:Y'9 Y(: Y): Y*: Y+: Y,9Y-9Y.9 Y/9 Y0: Y1: Y2:Y39Y49Y59Y69 Y7:Y89 Y9: Y::Y;9 Y<: Y=:Y>9!Y?:bottom right lip is numbY@9 YA:YB9 YC: YD:YE9 YF:YG:i have a very mild case of it compared to alot of people. it has affected only the right side from my cheek bone down including the skin on my neck. YH: YI:YJ9YK9YL9YM9 YN: YO:YP9YQ9YR9YS9 YT:YU9 YV:YW9 YX:YY9 YZ:Y[9 Y\: Y]:Y^9 Y_:Y`9 Ya: Yb: Yc: Yd: Ye:Yf9Yg9Yh9 Yi:Yj9 Yk:Yl9Ym9Yn9Yo9Yp9~ Z9W@Z: Mary E. LydonZ:48 Pleasant StreetZ: ManchesterZ: Massachusetts Z:USAZ:01944Z: 978 526 4754Z: annasmom1~ Z 9G@Z :FemaleZ :RightZ :RombergZ :Parry -RombergZ: Skin ChangesAZ:8My skin change change was a bruise that never went away. Z: Z:9.5 Z:20Z9Z:Right Z:Z9 Z: Z:Z9 Z: Z:Z9 Z: Z: Z:Blue Z :Blue Z!:Z"9 Z#:Z$9~ Z%9F@Z&:Petit mal, and I have only had two seizures two months apart. Both seizures occurred in my sleep. They are controlled by anti-convulsives.Z'9 Z(: Z): Z*:85Z+:,Tegretol 200mg 3x Lamictal 25mg 2 tablets 2x~ Z,9F@Z-9Z.9 Z/9 Z0: Z1: Z2:Z39Z49Z59Z69 Z7:Z89 Z9: Z::Z;9 Z<: Z=:Z>9 Z?:Z@9 ZA:ZB9ZC:The vision in my right eye is much poorer than left. There is optic nerve damage, eye doctor says that damage is not ongoing. He has monitored it for 17 years. ZD:ZE9 ZF: ZG: ZH: ZI:ZJ9ZK9ZL9ZM9 ZN: ZO:ZP9ZQ9ZR9ZS9GZT:>I had liquid silicone injections in my cheek and chin in 1974.ZU9 ZV:ZW9 ZX:ZY9 ZZ:Z[9 Z\: Z]:Z^9 Z_:Z`9 Za: Zb: Zc: Zd: Ze:Zf9Zg9Zh9 Zi:Zj9 Zk:Zl9Zm9Zn9Zo9Zp9~ [9@W@[:Siomara M. Laguna[:928 Larchwood Avenue[:Hacienda Heights[: California [:USA[: 91745-1527[: (626)536-7102![:xiomy200091745@yahoo.com~ [ 9;@[ :Female[ :Right[ :Romberg [ :[: Skin Changes?[:6The tissue on the left side of my lip began to atrophy [: [:12 [:21[9 [:Left [:Both[9 [:Left [:[9 [: [:[9 [: [:[:Brown[ :Brown [!:["9 [#:[$9 [%9 [&:['9 [(: [): [*: [+: [,9[-9[.9 [/9 [0: [1: [2:[39[49[59[69 [7:[89}[9:tThe pain occurs on the left side. The doctors did not say anything, they just said that it was part of the syndrome. [::[;9 [<: [=:[>99[?:0The left side of the lip is raised and recessed.[@9G[A:>The eyebrow does not match with the bone structure of the eye.[B9[C:My left eye has dry eye syndrome and my peripheral and I have very little peripheral vision. I am almost blind from my left eye [D:[E9 [F:5[G:,coupe de sabre on the left side of my skull. [H: [I:[J9[K9[L9[M9 [N: [O:[P9[Q9[R9[S9 [T:[U9 [V:[W9 [X:[Y9 [Z:[[9C[\::I had a garage door fall on my head when I was 8 years old []:[^9[_: I don't know[`9 [a: [b: [c: [d: [e:[f9[g9[h9 [i:[j9 [k:[l9[m9[n9[o9[p9~ \9W@\:Serene Oh Hwei Fern&\:BLK 435 YISHUN AVE 6 #09-2102 \: \:\: Singapore\:760435 \:\:donb@blackmood.com~ \ 95@\ :Female\ :Right\ : Parry-Romberg \ :\: Skin Changes \: \: \:11 \:17\9 \:Left\:Lower\9 \: \:\9 \: \:\9 \: \:\:Brown\ :Brown \!:\"9 \#:\$9 \%9 \&:\'9 \(: \): \*: \+: \,9\-9\.9~ \/92@T\0:KI DON'T REALLY KNOW THE WORDS TO DESCRIBE. NO DOCTORS HAVE DESCRIBED BEFORE \1:Left \2:3\39\49\59\69\7:NECK AND SHOULDER ACHES. SOMETIMES FEELS THAT THE VISION OF MY LEFT EYE IS POORER. SOMETIMES I SEE THAT THE WHOLE PLACE IS LIKE A WAVE PASSING. SOMETIMES I CAN FEEL SOMETHING RUNNING ACROSS MY HEAD.\89r\9:iIT'S ON THE LEFT SIDE OF MY FACE. SOMETIMES IT AFFECT MY JAW THAT I CAN'T OPEN MY MOUTH. AND I GET SPASM. \::\;9 \<: \=:\>9 \?:\@9 \A:\B9\C:AS MENTIONED ABOVE \D:\E9j\F:aSPASM OF THE LEFT SIDE OF THE TONGUE. WHEN I STICK OUT MY TONGUE, IT'S POINTING TOWARDS THE LEFT.\G:I'M NOT SURE IF THIS IS RELATED TO PRS, I'VE GOT SWALLOWING PROBLEM. INTIALLY, I EASILY GET CHOKE ON RICE OR SMALL PARTICLES LIKE BISCUITS. I'VE DONE INVESTIGAIONS AND WAS TOLD THAT MY ESOPHAGEAL MUSCLES ARE WEAK\H:I DID NOT GO FOR FURTHER CHECKS ON IT AS I DEVELOPED WAYS TO PREVENT MYSELF FROM CHOKING. NOW, I TAKE EXTRA EFFORT TO MAKE SURE I SWALLOW PROPERLY. AND THUS I DON'T GET CHOKE AS OFTEN. \I:\J9\K9\L9\M9\N:EMG, FLUOROSCOPY \O:\P9\Q9\R9\S9\T:ACCUPUNCTURE-I'VE STOPPED AS I DON'T HAVE THE TIME TO GO. I FELT IT'S QUITE EFFECTIVE. BUT DURING THE TREATMENT, IT'S RATHER UNTOLERABLE. PHENYTOIN AND ANAREX- I ONLY TAKE THESE PRN. I FIND THAT IT'S EFFECTIVE AS WELL.\U9 \V:\W9 \X:\Y9 \Z:\[9 \\: \]:\^9 \_:\`9 \a:\b:I'm Serene Oh from Singapore. I think I've missed out something which may or may not be relevant. I had a lipoma removed in late 1997. It's located near my right scapular. Guess that's about all. Really hope to hear from you soon. \c: \d: \e:\f9\g9\h9 \i:\j9 \k:\l9\m9\n9\o9\p9~ ]9W@]: Natalie Bru]:5835 SW 89 AVE]:Miami]:Florida ]:USA]:33173]: 305-275-8422]:epslimjim@aol.com~ ] 94@] :Female] :Right] : Parry-Romberg ] :]: Skin Changesy]:pDeformity of the left side of my face. My fat of my left side of my lip and chin is pretty much completely gone. ]: ]:15 ]:17]9 ]:Left]:Lower]9 ]: ]:]9 ]: ]:]9 ]: ]:]:Brown] :Brown ]!:]"9 ]#:]$9 ]%9 ]&:]'9 ](: ]): ]*: ]+: ],9]-9].9 ]/9 ]0: ]1: ]2:]39]49]59]69 ]7:]89q]9:hLeft side of my face where the fat is absorbed, it sometimes has either a tingling feeling or a pounding ]::];9 ]<: ]=:]>9:]?:1Left side of my lips is absorbed and discoloured.]@9 ]A:]B9 ]C: ]D:]E9 ]F: ]G: ]H: ]I:]J9]K9]L9]M9 ]N: ]O:]P9]Q9]R9]S9 ]T:]U9 ]V:]W9 ]X:]Y9 ]Z:][9 ]\: ]]:]^9 ]_:]`9 ]a: ]b: ]c: ]d: ]e:]f9]g9]h9 ]i:]j9 ]k:]l9]m9]n9]o9]p9~ ^9X@^: Mary Camp^:1118 Bardell Dr.^: Wilmington^:Delaware ^:USA^:19808^:(302) 994-7616!^:mec1118@aol.com is wrong~ ^ 9D@^ :Female^ :Right^ : Parry-Romberg^ :en-coup de sabre^: Skin Changes ^: ^: ^:2 ^:5^9 ^:Left ^:Both^9 ^: ^:^9 ^: ^:^9 ^: ^:^:Brown^ :Brown ^!:^"9 ^#:^$9 ^%9 ^&:^'9 ^(: ^): ^*: ^+: ^,9^-9^.9 ^/9 ^0: ^1: ^2:^39^49^59^69 ^7:^89 ^9: ^::^;9 ^<: ^=:^>9v^?:mLower lip, left side, was flattened, but was rebuilt during my teens using tissue from inside my right cheek.^@9 ^A:^B9 ^C: ^D:^E9R^F:ILeft side has a narrow line/notch running down it which has no taste buds^G:In addition to an en coup de sabre line (which was surgically cut away at age 6, leaving a scar in its place) the bony portion of the left side of my forehead is smaller in places than the right^H:Left side of my nose is smaller than the right. Left side lower jawbone as well as the tissue covering it is affected, as is the left side chin and neck. ^I:^J9^K9^L9^M9 ^N: ^O:^P9^Q9^R9^S9`^T:WSurgery in the 1970s and also injections of liquid silicone (which were not effective.)^U9^V:My mother, 70, has had Raynaud's symptoms for two decades and it has very recently been suggested she may have scleroderma, though this has not been definitively diagnosed.^W9 ^X:^Y9^Z:My mother also has Meniere's disease, an autoimmune condition of the inner ear, and my sister's son has Type 1 (juvenile) Diabetes, also linked to autoimmunity.^[9 ^\: ^]:^^9 ^_:^`9 ^a: ^b: ^c: ^d: ^e:^f9^g9^h9 ^i:^j9 ^k:^l9^m9^n9^o9^p9~ _9@X@_: Diana Mann_:Dapple Lea, Mill Road_: Peasenhall_:Suffolk IP17 2LW _:UK _:_: 01728 660527 _:~ _ 9K@ _ :Male_ :Right_ :Romberg&_ :Romberg's hemiffacial atrophy_: Skin Changes#_:Line then a darker pigment _: _:7 _:10_9_:Right _:Both_9 _: _:_9 _: _:_9 _: _:_:Brown_ :Brown _!:_"9 _#:_$9 _%9 _&:_'9 _(: _): _*: _+: _,9_-9_.9~ _/9$@_0:Phenobarbitone as a child. Constant dull headache. Intermittently very intense pain over right eye. Nausea, photophobia, has to sit up _1:Both _2:4_39_49_59_69 _7:_89%_9:Feels weird - load of cement _::_;9_<:Dentures when 11. _=:_>9_?:Thin on right side_@97_A:.Right eyebrow - hairs don't start until middle_B9'_C:Scar tissue on right eye - can _D:_E9_F:Wasted on right-_G:$Bald patch where rombergs is in head _H: _I:_J9_K9_L9_M9 _N: _O:_P9_Q9_R9_S9 _T:_U9 _V:_W9 _X:_Y9;_Z:2Mother's side had Huntingtons Chorea, Mum diabetic_[9 _\: _]:_^9/__:&? Measles and Scarlet fever age 5 or 6_`9 _a: _b: _c: _d: _e:_f9_g9_h9 _i:_j9 _k:_l9_m9_n9_o9_p9Dl ]l o@ Gu # `q,T0@aq,@bq,@cq,@dq,@eq,@fq,@gq,@hq,@iq,@$jq,@kq,$@lq,@$mq,@nq,$@oq,@pq,$@qq,@rq,@sq,@tq,@Guq,@vq,@wq,@xq,w@yq,@zq,@{q,@G|q,@}q,@G~q,@q,@~ `9X@ `:Martha M. Hollingsworth`:2109 Maiden Lane`:Roanoke`:Virginia `:USA`:24015`: 540-344-3878#`:martyh29@home.com is wrong~ ` 9E@` :Female` :Right` :Romberg ` :`: Skin Changes `: `: `:11 `:42`9`:Right`:Upper`9 `: `:`9 `: `:`9 `: `:`:Brown` :Brown `!:`"9 `#:`$9 `%9 `&:`'9 `(: `): `*: `+: `,9`-9`.9 `/9 `0: `1: `2:`39`49`59`69 `7:`89 `9: `::`;9 `<: `=:`>9 `?:`@9 `A:`B9 `C: `D:`E9 `F: `G: `H: `I:`J9`K9`L9`M9 `N: `O:`P9`Q9`R9`S9 `T:`U9 `V:`W9 `X:`Y9 `Z:`[9 `\: `]:`^9 `_:``9 `a:`b:When I was about 11 or 12, I started noticing that my right forehead appeared different and that a vein running vertically in the center of my forehead was more apparent. At about the same time, I was stung by a bee at my hairline and this was thought to  `c: `d: `e:`f9`g9`h9 `i:`j9 `k:`l9`m9`n9`o9`p9~ a9X@a:Patricia Del Mercadoa:3941 Shaker Run Circlea: Fairfielda: California a:USAa:94533a: 707-428-1068$a:delmercado@worldnet.att.net~ a 9E@a :Femalea :Righta :Romberg a :a: Skin Changesa:Very insidious facial hemiatrophy on the left side of my face. I now have thinning skin on the affected side of my face, with loss of eyebrow and receding hairline (slight) on the affected side. a: a:23 a:27a9 a:Left a:Botha9 a: a:a9 a: a:a9 a: a: a:Blue a :Blue a!:a"9 a#:a$9 a%9 a&:a'9 a(:Both a):Both a*: a+: a,9a-9a.9 a/9 a0: a1: a2:a39a49a59a69 a7:a89 a9: a::a;9 a<: a=:a>9 a?:a@9"aA:loss of hair on left sideaB9 aC: aD:aE9 aF: aG: aH: aI:aJ9aK9aL9aM9 aN: aO:aP9aQ9aR9aS9aT:The prednisone and Imuran medication were actually given for polymyositis which I developed after taking and antidepressant called SerzoneaU9 aV:aW9 aX:aY9 aZ:a[9 a\: a]:a^9 a_:a`9 aa: ab: ac: ad: ae:af9ag9ah9 ai:aj9 ak:al9am9an9ao9ap9~ b9Y@b:Kathy S. McCormickb:3415 Havershire Drb: Missouri Cityb:Texas b:USAb:77459b: 281-208-1927%b:kathymac@pet.med.uth.tmc.edu~ b 9G@b :Female b :Leftb : Parry-Romberg b :b: Skin Changesb:After a year at my current job (1996), many co-workers kept asking if I'd been "hit" or been in an accident because my left eye and left cheekbone seemed to be "indented" and "bruised". It had been so prior to that. b: b:41 b:42b9 b:Leftb:Lowerb9 b: b:b9 b: b:b9 b: b: b:Blue b :Blue b!:b"9b#:My hair is not different colours, but I actually am missing hair. I have a "bald spot" the size of a half dollar that also has a crooked "line" (approx. 1/4 in. wide) leading from it to my forehead that is also missing hair.b$9 b%9 b&:b'9 b(: b): b*: b+: b,9b-9b.9 b/9 b0: b1: b2:b39b49b59b69 b7:b89b9:This has just started to occur in the past 6-8 months. I have not been diagnosed by a doctor, however my mother has trigeminal neuralgia (she is 75 now) which started in her mid to late 50'sb::She has been placed on anti-epileptic drugs to try and control the pain. She DOES NOT have Parry Romberg's. No one in my family of family tree has PRS.b;9 b<: b=:b>9 b?:b@9fbA:]My left eybrow is smaller and has less hairs. I have almost NO lower eyelash on the left eye.bB9bC:My left eye has always had poorer vision (20/200) compared to my right (20/80) until I had RK surgery to correct my myopia and astigmatism performed on both eyes in 1992.ubD:lI now have 20/15 vision in both eyes. I have noticed that I have re-developed an astigmatism in my left eye.bE9nbF:eThe left side of my palate has a considerable amount of wasting of soft tissue compared to the right.bG:I also have developed a "cleft" in my chin (just inthe past 2 years) which I believe is related to the en-coup de sabre. No one in my family has a cleft chin. bH: bI:bJ9bK9bL9bM9bN:A neurologist tested my left/right arm, leg, hand strength. Also did a test where needles were inserted into the facial muscles (bilaterally) and electricity was conducted through them to test the facial muscles for weaknesses. bO:bP9bQ9bR9bS9*bT:!I was put on 200mg BID Plaquenil.bU9 bV:bW9 bX:bY95bZ:,My mom has trigeminal neuralgia (Right side)b[9 b\: b]:b^9 b_:b`9 ba: bb: bc: bd: be:bf9bg9bh9 bi:bj9 bk:bl9bm9bn9bo9bp9~ c9@Y@c: Julie Backec:98 Forest Drivec:Boisec:Idaho c:USAc:83716c: 208-336-6878!c:juliebacke@earthlink.net~ c 9H@c :Female c :Leftc :Romberg$c :Romberg's Hemifacial Atropyc: Skin Changes7c:.discoloration under my right eye - "black eye" c: c:6 c:40c9c:Right c:Bothc9 c: c:c9 c: c:c9 c: c: c: c : c!:c"98c#:/white hair developed faster on the right templec$9 c%9 c&:c'9 c(: c): c*: c+: c,9c-9c.9 c/9 c0: c1: c2:c39c49c59c69 c7:c89c9:A sharp stabbing pain on the left side, right above jaw line - occurs very infrequently but in July of this year, occurred daily for a week or more. c::c;9 c<: c=:c>9uc?:lwhen younger, my lips on the right side had uneven bumps - also, discoloration above the lips on right side.c@9$cA:lower on forehead than leftcB9 cC: cD:cE9 cF:cG:Discoloration below right eye and neck under jaw line and also above right lip. Tissue melted away from right temple extending down right side of face. cH: cI:cJ9cK9cL9cM9 cN: cO:cP9cQ9cR9cS9cT:Have looked into reconstructuve surgery but did proceed with the surgery because of fear of the invasive procedures and more recently, health insurance denied coverage for the surgery - did not appeal decision because of my own uncertainty of the extensivcU9 cV:cW9 cX:cY90cZ:'Mother had kidney and thyroid problems.c[9 c\: c]:c^9 c_:c`9 ca:cb:I am still discovery ailments that might be associated with the hemifacial atrophy. Recently, pains on the left side of my face and frequent sinus infections may have connection to the hemifacial on the right. Consequently, sought alternative treatment ofcc:As stated earlier, I am still learning more about this disease and how it has affected my body. Am still making associations with symtoms that I previously thought would unrelated - particularly with the left side of my face - the past year, I have had se cd: ce:cf9cg9ch9 ci:cj9 ck:cl9cm9cn9co9cp9~ d9Y@d:Moises Jimenezd:2119 madison ct.d: Chowchillad: California d:USAd:93610d:(559) 665-7213d:tj_soldya@hotmail.com~ d 9.@ d :Maled :Rightd : Parry-Romberg d :d: Skin Changesd:When i was born i was a normal baby but when i was about 3 yrs. old my right side of my face started to look different.I am missing some tissue around the cheek area, and i have a dent on my forehead. 'coup de sabre' d: d:3 d:4d9d:Right d:Bothd9 d: d:d9 d: d:d9 d: d:d:Brownd :Brown d!:d"9 d#:d$9 d%9 d&:d'9 d(: d): d*: d+: d,9d-9d.9 d/9 d0: d1: d2:d39d49d59d69 d7:d89 d9: d::d;9 d<: d=:d>9 d?:d@9 dA:dB9 dC: dD:dE9 dF: dG: dH: dI:dJ9dK9dL9dM9 dN: dO:dP9dQ9dR9dS9 dT:dU9 dV:dW9 dX:dY9 dZ:d[9 d\: d]:d^9 d_:d`9 da: db: dc: dd: de:df9dg9dh9 di:dj9 dk:dl9dm9dn9do9dp9~ e9Y@e: Celia Pidoux e: e: e:e:France e: e:&e:chantal.pidoux@mairie-lyon.fr e 9e :Female e : e : e : e: e: e: e: e:e9 e: e:e9 e: e:e9 e: e:e9 e: e: e: e : e!:e"9 e#:e$9 e%9 e&:e'9 e(: e): e*: e+: e,9e-9e.9 e/9 e0: e1: e2:e39e49e59e69 e7:e89 e9: e::e;9 e<: e=:e>9 e?:e@9 eA:eB9 eC: eD:eE9 eF: eG: eH: eI:eJ9eK9eL9eM9 eN: eO:eP9eQ9eR9eS9 eT:eU9 eV:eW9 eX:eY9 eZ:e[9 e\: e]:e^9 e_:e`9 ea:eb:Clia est ne le 19 octobre 1978 l'Hpital Gnral de la Marine El Ferrol, en Espagne. Ds sa naissance il a t constat une plaie ronde, de la taille d'une pice de 20 centimes, sur le sommet de son crne, ainsi que plusieurs boules sur ses jamec:1: Neuropediatrics 1995 Dec;26(6):306-9 Related Articles, Books, LinkOut Progressive facial hemiatrophy with multiple benign tumors and hamartomas. Derex L, Isnard H, Revol M. Service d'Explorations Neurologiques, Centre Hospitalier Lyon-Sud, ed: ee:ef9eg9eh9 ei:ej9 ek:el9em9en9eo9ep9~ f9Z@f: Hannah Bodnarf: p.o. box 63f: Millsborof: Pennsylvania f:USAf:15348f: 724-377-1179 f:~ f 9$@f :Female f :Leftf :Romberg f :f: Skin Changes f: f: f:4 f:9f9f:Rightf:Lowerf9 f: f:f9 f: f:f9 f: f: f:Blue f :Blue f!:f"9 f#:f$9 f%9 f&:f'9 f(: f): f*: f+: f,9f-9f.9 f/9 f0: f1: f2:f39f49f59f69 f7:f89 f9: f::f;9 f<: f=:f>9 f?:f@9 fA:fB9 fC: fD:fE9 fF: fG: fH: fI:fJ9fK9fL9fM9 fN: fO:fP9fQ9fR9fS9 fT:fU9 fV:fW9 fX:fY9 fZ:f[9 f\: f]:f^9 f_:f`9 fa: fb: fc: fd: fe:ff9fg9fh9 fi:fj9 fk:fl9fm9fn9fo9fp9~ g9Z@g:Pam Kerr (for Nikki) g: g: g: g:USA g: g:g:kerr4@adelphia.net~ g 9"@g :Femaleg :Rightg :En coup de sabre g :g: Skin Changes g: g: g:9 g:9g9g:Right g:g9 g: g:g9 g: g:g9 g: g: g:Blue g :Blue g!:g"9:g#:1Losing patches of hair on the scalp near foreheadg$9 g%9 g&:g'9 g(: g): g*: g+: g,9g-9g.9 g/9 g0: g1: g2:g39g49g59g69 g7:g89 g9: g::g;9 g<: g=:g>9 g?:g@9 gA:gB9 gC: gD:gE9 gF::gG:1Losing patches of hair on the scalp near forehead gH: gI:gJ9gK9gL9gM9 gN: gO:gP9gQ9gR9gS9.gT:%Steroid IV 3 times/month MethotrexategU9 gV:gW9 gX:gY9 gZ:g[9 g\: g]:g^9 g_:g`9 ga: gb: gc: gd: ge:gf9gg9gh9 gi:gj9 gk:gl9gm9gn9go9gp9~ h9[@(h:Annette Marie (Halladay) Morrish: 967 Coolidgeh: River Rougeh:Michigan h:USAh: 48218-1608h: 313-843-9656h:SgtBooks@att.net~ h 9A@h :Femaleh :Righth : Parry-Romberg)h : Hemifacialatophy (nothing added)h:Other$h:my chin was growing crooked h: h:11 h:33h9h:Righth:Lowerh9 h: h:h9 h: h:h9 h: h:h:Hazelh :Hazel h!:h"9 h#:h$9 h%9 h&:h'9 h(: h): h*: h+: h,9h-9h.9~ h/91@Wh0:Nhere really isnt a "way to have a migraine" but basically, the pain, builds as h1:Both h2:3h39h49h59h69h7:time goes... starts in behinds the right ear, around the back and goes up and to the front, over to the other side. It generally is on the right side, completely before it goes to the left.h89 h9: h::h;9^h<:Uver the time from 1985 till, present I have had all but 9 lower (front) teeth pulled. h=:h>96h?:-I have close to no top lip on the right side.h@9 hA:hB9[hC:RI do weat glasses, have since 1987, but Im not sure that it has anything to do it. hD:hE9 hF: hG: hH: hI:hJ9hK9hL9hM9~hN:uBonescan (not sure of the technical name of it) have had really intense xray, that took like an hour to xray my head. hO:hP9hQ9hR9hS9 hT:hU9 hV:hW9 hX:hY9 hZ:h[9 h\: h]:h^9h_:had a REALLY bad infection from a blow to the head when I was young. From what I was told by my Aunt, My brother it me with a little metal gun, and got infected.h`9 ha: hb: hc: hd: he:hf9hg9hh9 hi:hj9 hk:hl9hm9hn9ho9hp9~ i9@[@i: Teresa Burksi: P.O. Box 1804i:Cantoni:Georgia i:USAi:30114 i:i:watisacherokee@aol.com~ i 9G@i :Femalei :Right i :PFHA i :noi: Skin ChangesKi:Batrophy of the lower right side of my face, staring around age 18. i: i:17 i:35i9i:Righti:Loweri9 i: i:i9 i: i:i9 i: i:i:Greeni :Green i!:i"9 i#:i$9 i%9 i&:i'9 i(: i): i*: i+: i,9i-9i.9 i/9 i0: i1: i2:i39i49i59i69 i7:i89i9:I don't have bad headaches as stated above, but I do have pain along the right side of my face, mainly in the eye, nose and upper mouth area. i::i;9Xi<:OI say yes, because I've had tooth pain, with no identifable objective findings. i=:i>9;i?:2Indentation on the upper lip on the affected side.i@9 iA:iB9iC:I was born with a lazy eye, the funny thing is the lazy eye is on the affected side of my face. This right eye has always been somewhat smaller than the left eye. In addition, the right eye has sunken somewhat into my skull (more so that the left eye). iD:iE9 iF:iG:around the lower jaw line on the affected side, the skin turned almost a bruised-like blue color, because of the fat that was wasting away under the skin.iH:low level of self-esteem---feeling that I don't have a pretty face, and that men know it, and show it in their actions toward me. It has affected my social life. iI:iJ9iK9iL9iM9iN:None of the above. What's funny it did not even cross my mind at the time I was dx'd.....now, looking back, it makes me mad that the doctor did not even address the possible need for tests. iO:iP9iQ9iR9iS90iT:'Have had, I think, around 17 surgeries.iU9 iV:iW9 iX:iY9 iZ:i[9i\:skull fx at age 19 i]:i^9i_:I first noticed it when I was in the hospital from a car accident, this is when I noticed the atrophy around my nose. Along with the skull fx mentioned above, I had received a blow the the face.i`9 ia: ib: ic: id: ie:if9ig9ih9 ii:ij9 ik:il9im9in9io9ip9~ j9[@j:Les Bienkiewiczj:60 Heysen Streetj:WESTON j:ACTj: Australia j:2611 j:j:bienk@bigpond.com~ j 9H@ j :Male j :Left j :PFHA j :j: Skin Changes%j:gradual facial disfigurement j: j:19 j:20j9 j:Left j:Bothj9 j: j:j9 j: j:j9 j: j:j:Hazelj :Hazel j!:j"9 j#:j$9 j%9 j&:j'9 j(: j): j*: j+: j,9j-9j.9~ j/93@Tj0:KMy headaves only last till late 20s - i have been free from them since then j1:Both j2:8j39j49j59j69j7:nauseaj89nj9:econtinual "ache" .. awareness of tightness. Eye has also sunk and eye is often dry and uncomfortable. j::j;9 j<: j=:j>9Aj?:8left top of lip is "lifted" and lloks like i ma sneeringj@9 jA:jB9BjC:9.. but .. i always had a weak left eye .. coincidence ??/ jD:jE9 jF: jG: jH: jI:jJ9jK9jL9jM9 jN: jO:jP9jQ9jR9jS9 jT:jU9 jV:jW9 jX:jY9!jZ:My sister (53) has lupusj[9 j\: j]:j^9Ij_:@not sure - possible blow playing football but this is not provenj`9 ja: jb: jc: jd: je:jf9jg9jh9 ji:jj9 jk:jl9jm9jn9jo9jp9~ k9[@k:Sean William Pricek:5425 dupont st.k: chattanoogak: Tennessee k:USAk:37412k:1-423-867-4691k:slysp1@aol.com~ k 9A@ k :Malek :Rightk :En coup de sabre k :k: Skin Changes k: k: k:8 k:29k9 k:Left k:Bothk9 k: k:k9 k: k:k9 k: k:k:Brownk :Brown k!:k"9k#:som eloss of hairk$9 k%9 k&:k'9 k(: k): k*: k+: k,9k-9k.9 k/9 k0: k1: k2:k39k49k59k69 k7:k89 k9: k::k;9 k<: k=:k>9 k?:k@9 kA:kB9 kC: kD:kE95kF:,an inch long indentation in middle of tongue(kG:some loss of hair near forehead kH: kI:kJ9kK9kL9kM9 kN: kO:kP9kQ9kR9kS9 kT:kU9 kV:kW9 kX:kY9 kZ:k[9k\:when i was 6 or 7 i hit my head hard which caused bleeding, i noticed a year or 2 later a indention where i had had accident "en coupe de sabre" sabre k]:k^9 k_:k`9 ka: kb: kc: kd: ke:kf9kg9kh9 ki:kj9 kk:kl9km9kn9ko9kp9~ l9\@l:yvonne demarinol:1521 NW 94 Avel: plantationl:Florida l:USAl:33322 l:l:gococo39@hotmail.com~ l 9H@l :Femalel :Rightl :En coup de sabre*l :!initially thought to be aleopecial: Skin Changes:l:1bald spots on head with accompanying sunken areas l: l:16.5 l:44l9 l:Left l:l9 l: l:l9 l: l:l9 l: l:l:Hazell :Hazel l!:l"9 l#:l$9 l%9 l&:l'9 l(: l): l*: l+: l,9l-9l.9 l/9 l0: l1: l2:l39l49l59l69 l7:l89 l9: l::l;9 l<: l=:l>9 l?:l@9 lA:lB9 lC: lD:lE9 lF:lG:This entire disease (au coup de sabre, and I guess I don't have the full syndrome you are describing here is located in spots on my head and is creeping out towards my forehead lH: lI:lJ9lK9lL9lM9lN:local biopsy I visited dermatologists for years before I was diagnosed and I still can't seem to get any information even through the web page. lO:lP9lQ9lR9lS9plT:gLow dose antibotics for a several month course through a specialist in Miami. (Could it have been you?)lU9 lV:lW9 lX:lY9[lZ:Rfirst cousin (female) with hair loss, will have to contact her regarding conditionl[9 l\: l]:l^9Wl_:Nepisode of severe leg pain and other problems a year or two prior to discoveryl`9 la:lb:I would like information on how local scleroderma and this syndrome are related and where to look for information regarding my condition. lc: ld: le:lf9lg9lh9 li:lj9 lk:ll9lm9ln9lo9lp9~ m9@\@m:Karen Hamiltonm:9662 E. Briana Lanem:Tucsonm:Arizona m:USAm:85748m: 520-722-3637m:Kat7221002@aol.com~ m 9C@m :Femalem :Rightm : Parry-Romberg=m :4I have Facial Hemiatrophy secondary to Parry Rombergm: Skin ChangesTm:KThe first symptoms were bone and tissue degeneration when I was very young. m: m:2.5 m:4m9m:Right m:Bothm9m:Right m:Bothm9 m: m:m9 m: m:m:Greenm :Green4m!:+I used to have blue eyes now they are greenm"9m#:I have a white streak on the front right side, it may just be going grey even though I am the youngest of three children and am the only one with white streakm$9 m%9 m&:m'9 m(: m): m*: m+: m,9m-9m.9~ m/99@m0:Very severe, thankfully I do not get them very often, but when they do occur they can last for days. I had one not too long ago that lasted for a little over a week. They are very painful. m1:Both m2:4m39m49m59m69m7:I do not know if this was due to the headaches or what, but the last one I had for a little over a week I had a continuous bad taste in my mouth and kept smelling something very unpleasant.m89m9:I do not know if I had pain when I was very young, but in my late twenties the symptoms got really bad with the facial pain. My right side of my face has always had a dull ache on and off that gets to be very annoying because it is so painful.m::I was told it was not trigeminal neuralgia, but that did start to happen in the last few years and I was put on Neurontin. I was put on that med also for the pain and weakness in my legs.m;9m<:I had four teeth on the right side (adult teeth), two were pulled when I got braces. They are very small and have little to no roots.m=:They amaze my denist to this day because I still have them. He states that because I take such good care of my teeth that they have not fallen out.m>9gm?:^On the right side the upper lip is smaller than on the left side. It is sorta like a cleft lipm@9 mA:mB9JmC:ASometimes I see spots, but my vision has always been rather good. mD:mE9mF:The line down the tongue is not straight and it is more on the right side than in the middle. Also there is an indentation on the right side that is very pronouced. Sometimes the right side can tingle or have pain. mG: mH: mI:mJ9mK9mL9mM9 mN: mO:mP9mQ9mR9mS9mT:#ErrormU9 mV:mW9 mX:mY9 mZ:m[9 m\: m]:m^9 m_:m`9 ma:mb:The worst symptoms are pain. I get body aches that are horrendous. I get fevers all the time, sometimes when I just have pain and no other symptoms. They are usually low grade, but I feel as if I am burning up. My immune system is impaired and I believe m mc: md: me:mf9mg9mh9 mi:mj9 mk:ml9mm9mn9mo9mp9~ n9\@n:Kathleen Cliftn:2301 E. Francis Stn:Ontarion: California n:USAn:91761n: 714 2675390'n:kate 102@socal.rr.com is wrong~ n 9M@n :Femalen :Right n :PFHAn :'en coup de sabre'n: Skin Changes n: n: n:12 n:n9n:Right n:Bothn9 n: n:n9 n: n:n9 n: n:n:Brownn :Brown n!:n"9Cn#::My 'en coup de sabre' is actually on the crown of my head.n$9 n%9.n&:%The hair in that area has never grownn'9 n(: n): n*: n+: n,9n-9n.9 n/9 n0: n1: n2:n39n49n59n69 n7:n89 n9: n::n;9n<:My jaws lock together, especially when I am under stress since I was 11 years old. I was told it was TMJ. My teeth would not stay straightened when I had braces. They kept moving. Lips n=:n>9 n?:n@9 nA:nB9 nC: nD:nE9 nF: nG: nH: nI:nJ9nK9nL9nM9 nN: nO:nP9nQ9nR9nS9nT:The right side of my jaw, under the lower lip atrophied. For a year or so a Dr Franklin Ashley at UCLA Uiversity Medical Center, gave me silicon injections in my right cheek, above my right upper lip and under my right lower lip. This was definitely not tnU9 nV:nW9 nX:nY9nZ:My mother had loss of pigmentation and that was what she thought I had when she first noticed my skin was changing. My daughter was born with loss of pigmentation on her right leg.n[9n\:yI was in a serious automobile accident when I was about 8 years old. I had extensive trauma to the right side of my face. n]:n^9Bn_:9Stress seemed to daargen the color in the affected areas.n`9 na: nb: nc: nd: ne:nf9ng9nh9 ni:nj9 nk:nl9nm9nn9no9np9~ o9\@o: Nickie Snowo:550 S. Van Ness #301o: San Franciscoo: California o:USAo:94110o: 415-255-8817o:nickiesnow@hotmail.com~ o 9@@o :Femaleo :Righto :Romberg o :o: Eye problems o: o: o:12 o:23o9o:Right o:o9o:Right o:o9o:Right o:o9o:Right o: o:Blue o :Blue o!:o"9 o#:o$9 o%9 o&:o'9 o(: o): o*: o+: o,9o-9o.9 o/9 o0: o1: o2:o39o49o59o69 o7:o89 o9: o::o;9 o<: o=:o>9o?:yMy upper, right lip atrophied and I lost all muscle movement on the right side of my mouth--I can not pucker up very wello@9 oA:oB9oC:My right eye is always irritated or dry. My vision in my right eye has deteriorated greatly in the past 3 years. I put oily drops in at night and tape my eye closed at night, which seems to sooth the stinging in my eye. oD:oE9:oF:1Right side of my tongue is smaller than the left.oG:wI do have an exceptionally lumpy scalp--a huge indent on the crown of my head, dents on the sides and a lumpy forehead. oH: oI:oJ9oK9oL9oM9 oN: oO:oP9oQ9oR9oS9 oT:oU9 oV:oW9 oX:oY9oZ:Possibly, both of my parents have trouble with poor circulation, particularly on one side of the body but nothing as severe or debilitating as PRSo[9 o\: o]:o^9 o_:o`9 oa: ob: oc: od: oe:of9og9oh9 oi:oj9 ok:ol9om9on9oo9op9~ p9]@p: Liz Taylorp:136 willow streetp:walthamp: Massachusetts p:USAp:02453p: 781-894-5073p:ejtaylor@mediaone.net~ p 9D@p :Femalep :Rightp :Romberg p :p: Skin Changes p: p: p:19 p:25p9p:Rightp:Lowerp9 p: p:p9p:Right p:p9 p: p:p:Brownp :Brown p!:p"9 p#:p$9 p%9 p&:p'9 p(: p): p*: p+: p,9p-9p.9~ p/9>@Ap0:8no- just nausea, flashing lights, need to be in the dark p1:Left p2:4p39p49p59p69 p7:p89 p9: p::p;9 p<: p=:p>9ep?:\atrophied and turned up. i drool occasionally while drinking and it is hard to eat sometimesp@9 pA:pB9 pC: pD:pE9 pF:2pG:)tmj and jaw spasms; eye socket sticks out pH: pI:pJ9pK9pL9pM9 pN: pO:pP9pQ9pR9pS9 pT:pU9 pV:pW9 pX:pY9 pZ:p[9 p\: p]:p^9 p_:p`9 pa:pb:i hav diabetes, asthma and graves disease. I was diagnosed with the diabetes at 15 and rombeergs followed. I also get ganglions on my hands and feet and have a shoulder and hip problem (scar tissue). No one ever associated them to romberg's. they always b pc: pd: pe:pf9pg9ph9 pi:pj9 pk:pl9pm9pn9po9pp9~ q9@]@q:L. Kellyq:221 S. Wolf Roadq:Wheelingq:Illinois q:USAq:60090 q:q:lkelly@d21.k12.il.us~ q 9*@q :Femaleq :Rightq :Romberg q :q: Skin Changes q: q: q:3 q:5q9 q:Left q:Bothq9 q: q:q9 q: q:q9 q: q:q:Greenq :Green q!:q"9 q#:q$9 q%9 q&:q'9 q(: q): q*: q+: q,9q-9q.9 q/9 q0: q1: q2:q39q49q59q69 q7:q89 q9: q::q;9 q<: q=:q>9 q?:q@9 qA:qB9 qC: qD:qE9 qF: qG: qH: qI:qJ9qK9qL9qM9 qN: qO:qP9qQ9qR9qS9 qT:qU9 qV:qW9 qX:qY9 qZ:q[9Iq\:@Hit her chin when she was 2. She fell on the ground off a swing. q]:q^9q_:Maybe the fall.q`9 qa: qb: qc: qd: qe:qf9qg9qh9 qi:qj9 qk:ql9qm9qn9qo9qp9~ r9]@r:Vailannkanni Fernandesnr:ec/o Louis Fernandes, Bhal Blding Gandhi Chowk Sawantwadi District Sindhudurg 416510 Maharashtra India r: r: r: r: r:r:JW.Sheat@xtra.co.nz~ r 96@r :Femaler :Right r : r : r: r: r: r:4 r:r9r:Right r:r9 r: r:r9 r: r:r9 r: r: r: r : r!:r"9 r#:r$9 r%9 r&:r'9 r(: r): r*: r+: r,9r-9r.9 r/9 r0: r1: r2:r39r49r59r69 r7:r89 r9: r::r;9 r<: r=:r>9 r?:r@9 rA:rB9 rC: rD:rE9 rF: rG: rH: rI:rJ9rK9rL9rM9 rN: rO:rP9rQ9rR9rS9 rT:rU9 rV:rW9 rX:rY9 rZ:r[9 r\: r]:r^9 r_:r`9 ra:rb:Dear Dr Jon I do not have Parry Romberg Syndrome but have a friend in India (An Indian) who does. I have made contact on her behalf with the support groups and have found your survey. I have tried to print it off but have been unsuccessful as it pri rc: rd: re:rf9rg9rh9 ri:rj9 rk:rl9rm9rn9ro9rp9~ s9]@s:Denise H.W. Eisenberg s:3721 S.W. Arnold Streets:Portlands:Oregon s:USAs:97219s: (503)246-4522s:elisacw@juno.com~ s 91@s :Females :Rights : Parry-Rombergs :facial hemiatrophys: Skin Changess:skin changes in the form of lost tissue. Denise had braces at the age of 11 or 12 or 13 and at that time I noticed her smile was different.s:I thought it was the braces. It turned out she had lost some fatty tissue in her cheek area adjacent to her nose. A tad of discoloration soon followed. s:11 s:12s9 s:Lefts:Lowers9 s: s:s9 s: s:s9 s: s:s:Browns :Brown s!:s"9 s#:s$9 s%9 s&:s'9 s(:Arm s):Both s*:8 s+: s,9s-9s.9 s/9 s0: s1: s2:s39s49s59s69 s7:s89!s9:left - only occasionally s::s;9 s<: s=:s>9s?:upper lip skin is thins@9 sA:sB9UsC:Lnear-sighted - due to family history of this or Parry Romberg? We don't know sD:sE9 sF:;sG:2Headaches - not really migraines. Pretty regularly sH: sI:sJ9sK9sL9sM9psN:gBlood tests. The Mayo Clinic in Minnesota had theories of connection with thyroid issues in the family. sO:sP9sQ9sR9sS9$sT:Surgery just on Oct 25 2001sU9LsV:CBut we have relatives with graves disease and on thyroid medicationsW9 sX:sY9sZ:thyroid - see aboves[9Gs\:>Not sure if it is relevant - at age 10 months she fell oin he\ s]:s^9 s_:s`9 sa: sb: sc: sd: se:sf9sg9sh9 si:sj9 sk:sl9sm9sn9so9sp9~ t9^@t:Amanda Bolingert:257 Edgewood Lanet: West Bendt: Wisconsin t:USAt:53095t:(262)-335-2098t:mandbolin@hotmail.com~ t 97@t :Femalet :Rightt : Parry-Rombergt :Hemofacial Atrophyt: Skin Changes t: t: t:6 t:9t9 t:Left t:Botht9 t: t:t9 t: t:t9 t: t:t:Brownt :Brown t!:t"9 t#:t$9 t%9 t&:t'9 t(: t): t*: t+: t,9t-9t.9 t/9 t0: t1: t2:t39t49t59t69 t7:t89@t9:7On the left side. The doctors never called it anything. t::t;9t<:I have braces on for the second time. My teeth keep shifting toward the affected side of my face. The doctors think that if I have my jaw fixed and have permant retainers my teeth will be straight. t=:t>9@t?:7My left side of my lips is smaller than the right side.t@99tA:0My left eyebrow doen't move as much as the righttB9_tC:VMy left gets watery a lot because of my tear duct and because I have no lower eye lid. tD:tE9StF:JThe line on my tongue is not in the middle it's more off to the left side. tG: tH: tI:tJ9tK9tL9tM9 tN: tO:tP9tQ9tR9tS9 tT:tU9 tV:tW9 tX:tY9 tZ:t[9 t\: t]:t^9 t_:t`9 ta: tb: tc: td: te:tf9tg9th9 ti:tj9 tk:tl9tm9tn9to9tp9~ u9@^@2u:)Kiara Higgins Mother Colleen doing survey u:u:Cairnsu: Queenslandu: Australia u: u:u:collmum@hotmail.com~ u 9@u :Femaleu :Rightu : Parry-Romberg u :u: Skin Changes u: u: u:3 u:4u9 u:Left u:Bothu9u:Right u:u9 u:Both u:u9u:Rightu:Loweru:Hazelu :Hazel u!:u"9 u#:u$9 u%9 u&:u'9 u(: u): u*: u+: u,9u-9u.9 u/9 u0: u1: u2:u39u49u59u69 u7:u89 u9: u::u;9^u<:Unerve damage kiara has had dental surgery to remove the damaged teeth upper left side u=:u>95u?:,wasting of upper lip and restricted movementu@9 uA:uB9;uC:2optic neuritis of left eye responded to prednisone uD:uE9-uF:$almost complete wasting of left sideuG:vcontractures on ankle and painful aches in legs some wasting of the oesophigus areas of atrophy on back chest and arms uH: uI:uJ9uK9uL9uM9?uN:6barrium swallow spinal tap endoscophy extensive bloods uO:uP9uQ9uR9uS9uT:methetrexate oral predisone and i.v methylpredisilone details of this treatment are available from Dr.Ron Laxer at the Hospital for sick children in Toronto Canada Kiaras treatment was based on a study conducted there.uU9 uV:uW9'uX:grandfather but stroke relateduY9 uZ:u[9?u\:612 months of age fell off sofa and knocked out briefly u]:u^9 u_:u`9 ua:8ub:/kiara has been diagnoised with coeliacs as well uc: ud: ue:uf9ug9uh9 ui:uj9 uk:ul9um9un9uo9up9~ v9^@v:Sylvia Hajdukovic#v:25 Trafalgar Street Nerangv: Gold Coastv: Queenslandv: Australia v:4211v: 61402007294v:sylviahaj@hotmail.com~ v 9D@v :Femalev :Rightv :Romberg v :v: Skin Changes8v:/right side of bottom lip thinned out over night v: v:19 v:25v9v:Rightv:Lowerv9 v: v:v9 v: v:v9 v: v: v:Blue v :Blue v!:v"9 v#:v$9 v%9 v&:v'9 v(: v): v*: v+: v,9v-9v.9 v/9 v0: v1: v2:v39v49v59v69 v7:v89v9: Right side v::v;94v<:+All squeazed together (teeth) Gums very bad v=:v>9)v?: Bottom right lip is thinned alotv@9 vA:vB9nvC:eRight eye has sunken into the skull Have to wear glasses to level off the eye vision sensitive to sun vD:vE9LvF:CRight side of tongue has deteriorated and l cant poke out my tonguevG:My jaw locks all the time and l cant open my mouth I had excruciating pain in the jaw and the right temple but not so much now after all the electrolic treatmentvH:My right breast is giving me alot of pain and the doctors say it has to do with the Rombergs Mamogram showed something there but they dont know what it is vI:vJ9vK9vL9vM9$vN:Every X-Ray possible Biopsy vO:vP9vQ9vR9vS9 vT:vU9 vV:vW9 vX:vY9 vZ:v[9 v\: v]:v^9v_:L was I was 7mths pregnat at the time and l had a very stressful day and the overnight it happened the changes to my face first the lip and then 2weeks later my chin just pucked up overnight agianv`9 va:vb:My jaw locks all the time and l cant open my mouth I had excruciating pain in the jaw and the right temple but not so much now after all the electrolic treatment My right breast is giving me alot of pain and the doctors say it has to do with the Rombergs  vc: vd: ve:vf9vg9vh9 vi:vj9 vk:vl9vm9vn9vo9vp9~ w9^@w: Kristi Davisw: 105 Evcar Wayw: Rio Lindaw: California w:USAw:95673w: 9169926036w:ckdavis@excite.com~ w 9?@w :Femalew :Right w :PFHA w :w: Skin Changes7w:.I started with dark spots on my neck and face. w: w:19 w:29w9 w:Left w:Bothw9 w: w:w9 w: w:w9 w: w:w:Brownw :Brown w!:w"9 w#:w$9 w%9 w&:w'9 w(: w): w*: w+: w,9w-9w.9~ w/9"@ w0: w1:Both w2:4w39w49w59w69w7:When I get migraines, they begin with a floating light that I see in peripheral view. Then my head starts aching so badly that it makes me sick to my stomach and won't go away until I sleep for several hours, which is difficult because the pain is so sevew89Pw9:GI get sharp pains that shoot through the left side of my face and head. w::w;9yw<:pAll of my teeth on the left side of my mouth have been effected. The roots and nerves are pretty much dissolving w=:w>9Dw?:;My lips, both top and bottom, are thinner on the left side.w@9 wA:wB9AwC:8My sight is a little worse in my left eye than my right. wD:wE9wwF:nMy tongue looks strange. The line in the middle is moved to the left side because the left side has atrophied.wG:{I get severe sharp pains in my left ear and down my neck every great while. They usually last 30 seconds to a minute or so. wH: wI:wJ9wK9wL9wM9 wN: wO:wP9wQ9wR9wS9 wT:wU9 wV:wW9 wX:wY9 wZ:w[9 w\: w]:w^9w_:Just a month or so before I noticed the darkening on my face and neck, I had been hit extremely hard several times on the left side of my face. I always thought it was just coincidence. Lymew`9 wa:wb:I have had five surgeries since November of last year. My last was in August. I had a new type of implant put in my chin and cheek. The one in my cheek wouldn't take and the one in my chin was much too large and looked awkward. I would love to have a surg wc:wd:I am extremely glad that someone is willing to actually research this disease. I have talked to several doctors who know absolutely NOTHING about this syndrome and are not interested at all in finding anything out. Thank you for your support. we:wf9wg9wh9 wi:wj9 wk:wl9wm9wn9wo9wp9~ x9_@x: Deepa Jacob.x:%YD Equipments, Pulamon , Kottarakkarax:Kollamx:Keralax:Indiax:691506x: 0474-453225$x:ydeq@satyam.net.in is wrong~ x 9@@x :Femalex :Right x :PFHAx :linear morpheax: Skin Changes x: x: x:25 x:33x9 x:Left x:x9 x: x:x9 x: x:x9 x: x:x:Brownx :Brown x!:x"9 x#:x$9 x%9 x&:x'9 x(: x): x*: x+: x,9x-9x.9~ x/9 @x0: svere migrain x1:Left x2:x39x49x59x69x7:fading of visionx89 x9: x::x;9 x<: x=:x>9 x?:x@9 xA:xB9 xC: xD:xE9 xF: xG: xH: xI:xJ9xK9xL9xM9xN:x-ray xO:xP9xQ9xR9xS93xT:*took tablets to increase blood circulationxU9 xV:xW9 xX:xY9 xZ:x[9 x\: x]:x^9 x_:x`9 xa: xb: xc: xd: xe:xf9xg9xh9 xi:xj9 xk:xl9xm9xn9xo9xp9~ y9@_@y:Victoria Norrelly:24 Worthing Roady: East Prestony: West Sussex y:UKy:BN16 1AZ y:!y:vickinorrell@hotmail.com~ y 96@y :Femaley :Righty : Parry-Romberg y :y: Skin Changes y: y: y:9 y:y9y:Right y:Bothy9 y: y:y9 y: y:y9 y: y: y:Blue y :Blue y!:y"9 y#:y$9 y%9 y&:y'9 y(: y): y*: y+: y,9y-9y.9 y/9 y0: y1: y2:y39y49y59y69 y7:y89 y9: y::y;9,y<:#Very Uneven on the upper right side y=:y>9)y?: Severe Wasting of top right sidey@9yA:whitening of hairyB9 yC: yD:yE9SyF:JWasting of right side of tongue (once described by a doctor as impressive)wyG:nI have hair loss the size of a 10 p on the right hand side. White patches of skin on back of neck and forehead yH: yI:yJ9yK9yL9yM9 yN: yO:yP9yQ9yR9yS9 yT:yU9 yV:yW9 yX:yY9#yZ:my aunt has a cleft palatey[9 y\: y]:y^9y_:I was hit in the forehead (right side) by a ball and the symptoms appeared as the bruising went away. The bruise lasted well over 6 monthsy`9 ya: yb: yc: yd: ye:yf9yg9yh9 yi:yj9 yk:yl9ym9yn9yo9yp9~ z9_@z: Janet Taylorz:12710 Golf Club Drivez:Savannahz:Georgia z:USAz:31419z: (912)925-7098z:skeetersma@aol.com~ z 9E@z :Femalez :Right z :PFHA z :z: Eye problems z: z: z:20 z:28z9z:Rightz:Lowerz9 z: z:z9 z: z:z9 z: z:z:Brownz :Brown z!:z"9 z#:z$9 z%9 z&:z'9 z(: z): z*: z+: z,9z-9z.9 z/9 z0: z1: z2:z39z49z59z69 z7:z89 z9: z::z;9 z<: z=:z>9"z?:athropy on the right sidez@9 zA:zB9(zC:double vision, caused strabimus zD:zE9 zF:zG:The right side of my neck is very atrophied. My right eye was pulled upward. I have had muscle surgery on both it and the left eye. I am having some fat transfers done.zH:|I have had one so far, it corrected the right temple and added volume to my cheek. I will have another surgery in the spring zI:zJ9zK9zL9zM9 zN: zO:zP9zQ9zR9zS9FzT:=I have had two strabimus surgeries and one fat transfer done.zU9 zV:zW9 zX:zY9 zZ:z[9cz\:ZI did get hit in the head with a baseball bat when I was arount 11. Had a slight concusion z]:z^9 z_:z`9 za: zb: zc: zd: ze:zf9zg9zh9 zi:zj9 zk:zl9zm9zn9zo9zp9~ {9_@{:Bonnie F. Keenum{:4165 Cook Springs Road{: Pell City{:Alabama {:USA{:35125{: 205-338-0533{:Bfkeenum@aol.com~ { 9P@{ :Female{ :Right{ :Romberg { :{: Skin Changes1{:(Face - one side, ear and eye deteriation {: {:30 {:{9 {:Left{:Lower{9 {: {:{9 {: {:{9 {: {:{:Brown{ :Brown {!:{"9U{#:LOne small of white hair long before the normal gray hair as a result of age.{$9 {%9 {&:{'9 {(: {): {*: {+: {,9{-9{.9 {/9 {0: {1:Left {2:4{39{49{59{69 {7:{89{9:Years of reconstructive surgery have left nerve endings "out of place" and I have daily pain, sometimes mild and some days not so mild. {::{;9C{<::Seveal teeth were removed during various stages of surgery {=:{>9I{?:@Left side of my lips are slightly drawn downward as in a stroke.{@9 {A:{B9q{C:hI was told the Rombergs has destroyed parts of soft tissue and has left the eye fifty percent destroyed. {D:{E9 {F: {G: {H: {I:{J9{K9{L9{M9{N:University Hospital at Birmingham, Alabama did tests for @2 weeks and I have no idea what some of them were. Like testing nerve damage by inserting needles in my face. {O:{P9{Q9{R9{S9 {T:{U9 {V:{W9 {X:{Y9 {Z:{[9 {\: {]:{^9 {_:{`9 {a:{b:In early stages of treatment I was given numerous silicone injections while Doctors were looking for "solutions". Later, during a lenghty procedure the silicone was to be removed and the amount removed was much less than the recorded amount previously inj{c:At the time I was diagnosed I was told the only medical records available at that time was all children. At that time I was the only adult they were aware of undergoing treatment. Prior to age 30 I had no problems related to Rombergs. I have three beautif {d: {e:{f9{g9{h9 {i:{j9 {k:{l9{m9{n9{o9{p9~ |9`@|: Jacob McGowan|:3033 Webber Hill Road|: Trafalgar|:Indiana |:USA|:46181|: 812-597-0193"|:rlcrobin@reliable-net.net~ | 9@ | :Male| :Right| : Parry-Romberg | :|: Skin Changes|:Depression in right top side of skull after trauma to right forehead. Hair changed from blond to white then fell out. Half of eyelashes in right eye fell out. |: |:5 |:6|9|:Right|:Upper|9 |: |:|9 |: |:|9 |: |:|:Brown| :Brown |!:|"9R|#:IPatch of hair over "coup de sabre" turned blond then white then fell out.|$9 |%9 |&:|'9 |(: |): |*: |+: |,9|-9|.9 |/9 |0: |1: |2:|39|49|59|69 |7:|89 |9: |::|;9 |<: |=:|>9 |?:|@9.|A:%depression in center of right eyebrow|B9 |C: |D:|E9 |F:|G:Complains of itching in right eye. Always rubbing eye. Occassionaly complains of headache but not severe enough to suspect migraine. Comments on itching sensation at the "coup de sabre" mark. |H: |I:|J9|K9|L9|M9 |N: |O:|P9|Q9|R9|S9 |T:|U9 |V:|W9 |X:|Y9 |Z:|[9|\:5 yrs old fell off oak stool, stool fell and hit forehead, momentarily lost consciousness and wet his pants. No other problems found. |]:|^9(|_:Injury to head by falling stool|`9 |a: |b: |c:|d:I have completed this form on behalf of my grandson who was diagnosed 5 days ago. Hope to hear back very soon on any results from the survey. He does have bone involvment. Will send photo. Robin Clark |e:|f9|g9|h9 |i:|j9 |k:|l9|m9|n9|o9|p9~ }9 `@}:no name please }:}:lorain }:Ohio }:USA }:4405 }: }:~ } 9G@} :Female} :Right} :En coup de sabre } :}: Skin Changes }: }: }:22 }:24}9}:Right }:Both}9 }: }:}9 }: }:}9 }: }:}:Other} :Other }!:Grey}"9 }#:}$9~ }%99@&}&:ideopathic grand mal siezures}'9 }(: }): }*:8R}+:I400mg 4x daily at present I am not taking any. Although I probably should~ },9C@}-9}.9 }/9%}0:no doctor has described them}1:Right }2:4}39}49}59}69S}7:Jjust very intense pain in front of head and also in back of low scalp area}89 }9: }::};9 }<: }=:}>9A}?:8thinning on right side with a slight droop to this area.}@98}A:/hair loss, tissue loss, skin shiny and scarred.}B9 }C: }D:}E9 }F: }G: }H: }I:}J9}K9}L9}M9 }N: }O:}P9}Q9}R9}S9}T:When I was first diagnosed with scleroderma the cleveland clinic put me on d penicillamine, but I was losing bone marrow after the first few days and had to stop taking it. I have been on nothing since.}U9 }V:}W9 }X:}Y9 }Z:}[9/}\:&only for the pain from the scleroderma }]:}^9}_:Yes. when I first noticed pain and darkness in this area I had been hit on the forehead by a hard toy that my son had wielded at me while I was laying on the couch.}`9 }a:}b:my first diagnosis was trigemenial something I can't recall exactly what at this time. I sought help for pain- with early symptoms of discoloration , tissue loss and hair loss was pain in the fifth cranial nerve area. I was given a block to this area, whe}c:when I had the MRI the technician asked if I had a steel plate in my head, Or if I was ever kicked by a horse or had any other head trauma. He later showed me what he saw on the picture. I showed him the lesion and he was astounded. He had never heard of }d:Yes. when I first noticed pain and darkness in this area I had been hit on the forehead by a hard toy that my son had wielded at me while I was laying on the couch. I never had any symptoms before this. Although I have been told that this is probably pure }e:}f9}g9}h9 }i:}j9 }k:}l9}m9}n9}o9}p9~ ~9@`@'~:Tina Frances Michelle Paterson$~:70 ARDEN ROAD RUBERY REDNAL~: BIRMINGHAM ~: ~:UK~:B45OJA~: 0121 6245456#~:gmccarron57@currantbun.com ~ 9~ :Female~ :Right~ : Parry-Romberg<~ :3ROMBERG SYNDROME AND SCLERODERMA 'en coup de sabre'~: Skin Changes>~:5HAIR LOSS SMALL BALD PATCH ON RIGHT HAND SIDE OF HEAD ~: ~:3 ~:4~9~:Right ~:Both~9 ~: ~:~9 ~: ~:~9 ~: ~:~:Brown~ :Brown ~!:~"9 ~#:~$9 ~%9 ~&:~'9 ~(: ~): ~*: ~+: ~,9~-9~.9~ ~/9.@}~0:tSICKNESS, BLURRED VISION, LOSS OF APPITITE, SHAKES, DOTTED VISION,SEVERE THUMPING IN FOREHEAD AND BACK OF RIGHT EYE.~1:Right ~2:2~39~49~59~696~7:-TINGLING AND NUMBNESS DOWN RIGHT SIDE OF BODY~89/~9:&RIGHT SIDE, DOCTOR HAS NO EXPLAINATION ~::~;9`~<:WDENIST ADVISED ME THAT MY JAW AND TEETH WERE OUT OF LINE PROBERBLY DUE TO MY CONDITION. ~=:~>9?~?:6THE TOP LIP ON RIGHT HAND SIDE SEEMS TO BE MORE RAISED~@9T~A:KDENT ON FOREHEAD BY EYEBROW ON RIGHT HAND SIDE AND PART NONE GROWTH OF BROW~B9:~C:1CATTERACT IN LEFT EYE BLURRED VISION IN RIGHT EYE ~D:~E9 ~F: ~G: ~H: ~I:~J9~K9~L9~M9 ~N: ~O:~P9~Q9~R9~S9~T:CORRECTIVE SUGERY WAS UNDERTAKEN AT WORDSLEY HOSPITAL STOURBRIDGE BUT WAS NOT A COMPLETE SUCCESS, NO-ONE AS BOTHERED WITH ME SINCE.~U9 ~V:~W9 ~X:~Y9H~Z:?COUSIN HAS DEFORMATY OF CHEST BONES/ COUSIN WITH CERIBAL PAULSY~[9 ~\: ~]:~^9 ~_:~`9 ~a:~b:INDENTATION ON RIGHT SIDE TOP HEAD, THROUGH FOREHEAD, EYEBROW AND NOSE. NO GROWTH OF HAIR WHERE INDENTATIONS ARE (HAIR, BROW, EYELASHES. THE SPECLIALIST WHO WAS DEALING WITH ME AS A CHILD ADVISED MY MOTHER THAT IT WAS CALLED A (COUPE DE SABRE) THE EASY WAq~c:hI WOULD LIKE TO LEARN MORE ABOUT MY CONDITION AS I DONOT UNDERSTAND WHAT IT IS OR WHY. TEL 0121 244 6334~d:I WOULD BE GRATEFUL IF YOU COULD HELP ME WITH SOME OF MY QUESTIONS AND CONCERNS. I WOULD HAVE NO OBJECTION TO YOU CONTACTING ME OR YOU VEIWING MY PHOTO'S IF THE HOSPITALS ALLOW. MANY THANKS TINA PATERSON. ~e:~f9~g9~h9 ~i:~j9 ~k:~l9~m9~n9~o9~p9~ 9``@:Sherree Wakefield:25315 old carriage ln:spring:Texas :USA:77373: 281-355-5240:firehotsw23@yahoo.com~  97@ :Female :Right : Parry-Romberg :hemi facial atrophy: Skin Changes:Skin changes in face and on my back it lookes wite and brown it covers a big part of my back. left side of face is out of alinment with the right. skin is deteriated, no fat and hardly any mucle. Grang mother has this also. : :7.5 :239 :Left :Both9 : :9:Right :9 : ::Brown :Brown !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9~ /9 @ 0: 1:Both 2:839495969%7:happened at time of accident89 9: ::;9<:my teeth are un even on side of my mouth is smaller than the other and my mollers don't touch together like they should. my bite is uneeven. even after 4 years of brasses. =:>92?:)tope and bottom left lips are very small.@9*A:!one side is lower than the other.B9CC::i have to where glasses. one side is worse then the other. D:E9-F:$left side slitly smaller than other.rG:iAfter i got this I had learning problems. i halso had to sart wheiring glasses, amd my teeth got crucked. H: I:J9K9L9M9 N: O:P9Q9R9S9LT:Cabout to have reconstructive surgery. Houston texas Mamorial HurmanU9V:my grandmotherW9X: my brotherY9 Z:[9\:my jaw ]:^9;_:2a swimming accident involving my jaw at age 7 or 8`9 a:b:i was perfecly normal when i was born. I was involed in a swimming accident when i was 7 0r 8 years old involving my jaw, it left my face blue looking for one year, i had sivier head ackes after it happened latter my familey noticed that my left side of m c:d:the only comment i want to make is i am willing to become a lab rate to stop this disease. i am willing to talk to people and have my case researched. MY # 281-355-5240. e:f9g9h9 i:j9 k:l9m9n9o9p9D%l. \ {g M ; 4 Z/- ? z  c r q,T0@q,@q,@q,@q,@q,@q,@q,@q,@q,@$q,@q,$@q,@$q,@q,$@q,@q,$@q,@q,@q,@q,@Gq,@q,@q,@q,w@q,@q,@q,@Gq,@q,@Gq,@~ 9`@: Nestor Chavez7:.av. san juan de dios, terrazas de valle arriba:caracas: dtto federal: Venezuela:1080a:9750875:guacuco@cantv.net~ 91@ :Male :Right :Romberg :soft tissue atrophy: Skin Changes : : :5 :99 :Left:Upper9 : :9 : :9 : ::Brown :Brown !:"9#:alopecia$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9 <: =:>9?:left lip atrophy@9A:eyebrows tail alopeciaB9 C: D:E9 F: G: H: I:J9K9L9M9 N: O:P9Q9R9S9T: panoramic r/xU9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a: b: c:d:I wish your help for my treatment I dont have resources for my treatment Let me know if you can help me If you can send me a bibliographic material about my condition I,ll appreciate send by e mail to guacuco@cantv.net e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9`@:Samantha Beth Bishop :7 Dahlia Street, Apt. 4: Dartmouth: Nova Scotia:Canada:B3A 2R6: (902)461-2998$:beth.bishop@ns.sympatico.ca~ 9>@ :Female :Right :Romberg :: Skin Changes : : :16 :179 :Left :Both9 : :9 : :9 : ::Hazel :Hazel !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9~ /9,@30:*Doctors describe them as Classic Migraines 1:Both 2:6394959697:along with the tingling it's like a dead weight. I'm very clumsy. When this starts I can stop it before the headache starts with 2 extra strength Tylenol. Sometimes it starts with squiggly lines going across my vision and I can stop it the same way as abo89 9: ::;9 <: =:>9 ?:@9ZA:Qmy eyebrow is still there but I have a "dent" on that side of my face (left side)B9 C: D:E9 F: G: H: I:J9K9L9M9PN:GI've had a CT scan and an EEG but it was for investigating my migraines O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9D_:;getting a volleyball spiked right in my face at close range`9 a:b:migraines - run in father's side of family vision oddities - I've got "blind spots"(grey spots) in about the same areas in both eyes (1 in each eye). I've had all kinds of tests done but they don't seem to think it's related to the Romberg's. The speciali c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9`@: Marijke Zoon: Kamerkamp 13: Velserbroek ::The Netherlands:1991 DA:31 23 568 7622":Marijke.Zoon@KPNQwest.com~ 9A@ :Female :Right :Romberg :: Skin Changes:After a very stressful period in my life, I lost many kilos and when the situation was normal again the left part of my face stayed skinny : :30 :339 :Left :Both9 : :9 : :9 : ::Green :Green !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9<:Not any more but I used to have pains around the area of my ear and my jaw used to be very sensitive (probably because there was not too much fat left there). =:>9 ?:@9 A:B9 C: D:E9F:According to the Chinese doctor, the left side of my tongue shows less "fat" as the other side. There is a disbalance there as well. G: H: I:J9K9L9M9N:wAt the Chinese doctor they looked at the Ying & Yang balance of my organs by looking to my tongue and feeling my pulse. O:P9Q9R9S9T:Acupuncture in my face - until now 8 treatments. I only go once a week (because of work) but a treatment every other day would be the best. During and after the treatment (of 30 minutes) that area in my face is really glowing and more fat developed in thaU9 V:W9 X:Y9 Z:[9 \: ]:^9U_:Lmaybe the stressful period in my life (for about 6 months) of loosing weight`9 a: b: c:d:You can use my input for your research but I don't want to be questionned my other victims because I don't want to be too busy with this problem anymore. So I would appreciate to treat my private information confidential. thank you and good luck with the  e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9`@: Robin Nelson*:!18 St. Tropez, 93 Wierda Rd. East:Sandton:Gauteng: South Africa :2196:082-332-8293 (cell):rcee7@yahoo.com~ 9D@ :Female :Right : Parry-Romberg :: Skin Changes:no problems just a very skeletal looking face but on each side not just on one side. I do experience dull aching pain in my left leg but that's about it. : :20 :349 :Both:Lower9 : :9 : :9 :Left:Upper:Hazel :Hazel !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9~ /9B@ 0: 1:Both 2:6394959697:haven't been to a doctor about headaches, they seem to hit me when I concentrate really hard like doing crosswords or reading intensely, get motion sickness at the slightest movements,this only started four years ago, no aerobics as I get nauseous and I h89 9: ::;9 <: =:>9 ?:@9 A:B9C:Well actually that's hard to say. According to optometrist I have perfect vision but I see tiny black spots floating around when I look at a solid white surface.D:. I also feel a tingling in my eyes(both)and they will run water at the inside corner which if I apply any pressure to the area it hurts.E9 F: G: H: I:J9K9L9M9DN:;I am just beginning my journey, nothing done at this stage. O:P9Q9R9S9^T:UI am scheduled to have fat injections upon consultation with my third opinion doctor.U9 V:W9 X:Y9 Z:[9 \: ]:^9__:VI say no but I have often wondered about the meningitis that occured at the age of 12.`9 a:b:As I was saying before the reason I went to the doctor in the first place was to see if there was anything that could be done to "fatten" up my jaws. Also I got tired of being stared at as I have never been sick since the age of 12 when I caught spinal me c:d:I have no concerns. I just want to say thank you for the research you are doing and the survey is a wonderful start or addition whichever you choose. I could not find any research on Romberg's in 1994, the biggest medical journal at my local library had n e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9a@:Shandra Hubbard:7067 APPLECREEK COVE:MEMPHIS :TN :USA:38125: 901-759-0021:hope41171@yahoo.com~ 9>@ :Female :Right :PFHA :NO: Skin Changes : : :20 :309 :Left :9 : :9 : :9 : ::Brown :Brown !:"9 #:$9 %9 &:'9 (:Both ):Both *:4 +: ,9-9.9~ /94@D0:;USUALLY STARTS ON LEFT SIDE AROUND MY TEMPLE OR OVER LT EYE 1:Left 2:439495969 7:89 9: ::;9(<:TEETH AREN'T ALLIGNED ANY MORE. =:>9B?:9LEFT LIP IS PULLED UPWARDS FROM THE TIGHTENING OF MY SKIN@9 A:B9C:EYESIGHT IS POOR D:E9 F:"G:EYE RUNS WATER FREQUENTLY H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9 X:Y9'Z:AUTOIMMUNE HEPATITIS, ITP, DJD[9 \: ]:^9 _:`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9@a@: Vicki Noble:8/13 Parmenter Avenue:Corrimal:New South Wales: Australia :2518: 61 2 42845738&:vicki.l.noble@bhpbilliton.com~ 9G@ :Female :Right :Romberg :: Skin Changes : : :12 :249:Right :Both9 : :9 : :9 : : :Blue :Blue !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9~ /9@@0:The headaches start above my right eye and move through the 'sabre' mark on my forhead to the crown of my head and radiate to the side, almost to my right ear.1:Right 2:6394959697:Initially a neurologist thought they were the result of neuralgia from two surgeries as they seemed to occur more in the colder months. However, stress and lifestyle have a HUGE effect therefore I have a greater incidence when I am unhealthy. I seem to be899:I have constant pain in my right jaw. I am constantly seeing my dentist as I have a particular tooth that always aches and following xrays there is never a problem with the tooth.m::dDentists and neurologist have said it is neuralgia from Rombergs or the surgeries I have undertaken.;9<:As above. My teeth also 'swing' slightly to the right side and the dentist has advised that even if I were to brace them for a period, they would probably swing back to being uneven again. =:>9?:As I am now 46 years, I am starting to see some wrinkles and the right side of my mouth (top lip) has become very wrinkly with deep grooves.@9A:The 'sabre' extends from within the hairline down the forehead, down around and under the right eye. Where the mark goes, no hair grows, therefore, my right eyebrow is a bit patchy.B9C:My right eye is extremely sensitive. I have a terigium (cannot spell) on the right eye and need to wear glasses for reading as my right eye is constantly strained and red. Sometimes I get pain in the right eye with nerve twitches for the complete day. D:E9 F: G: H: I:J9K9L9M9~N:uI have a 1 cm piece taken from my face (right side near ear) for analysis (25 years ago). Many, many medications etc. O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9_:Possibly puberty`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9`a@:Heidi Del-Torchio:21 rue de la cte: Hrimoncourt ::France :): 03.81.30.93.15.//06.12.41.92.41.:del-torchio@voila.fr~ 94@ :Female :Right : Parry-Romberg :: Skin Changes':progressive Facial Hemiatrophy : :14 :179:Right :Both9 : :9 : :9 : ::Brown :Brown !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9~ /9.@ 0:1:Right 2:539495969+7:"Above refers to a 'tetany seizure'89%9:ALGIE VASCULAIRE (in french) ::;9<: Right teeth =:>9?:My lips are wasted@9 A:B9 C: D:E9 F: G: H: I:J9K9L9M9 N: O:P9Q9R9S9T: painkillersU9 V:W9 X:Y91Z:(My grandmother hgad trigeminal neuralgia[9D\:;he thinks i'm my pains are psychological "hysteric nevrose" ]:^9 _:`9'a:the doctors says it isn't thatb:i'm a french i'm 20 years old. i can't find informations about this symptomes ( doctors don't know it and believe that my pains are psychological) so could you send me information about this characterization and the treatment for this syndrome. i would alc:HELP ME, PLEASED d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9a@:Kelly Silliman:2901 SW 41st Apt 905:Ocala:Florida :USA:34474: 352-237-7335:Silli1269@aol.com~ 9?@ :Female :Right : Parry-Romberg :: Skin Changes : : :0 :259:Right:Lower9 : :9 : :9 : ::Hazel :Hazel !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:899:Hmmm I do onot know what trigeminal neuralgia is, but I do get pain in my face. One of the doctors I have seen said it was just nerve damage from the surgerys. Teeth ::;9 <: =:>9s?:jReally not sure if its my condition or it just is! My right top lip isnt the same as the left its smaller.@9 A:B9 C: D:E9 F: G: H: I:J9K9L9M9N:vThe first year I had eye tests, blood tests, MRI, brain tests..I think I saw every kinda of different doctor there is. O:P9Q9R9S9 T:U9 V:W9 X:Y9oZ:fMy mother has hasmotos ( Thyroid ) and ruematoid arthritis my grandmother and great G have/had Ra too.[9 \: ]:^91_:(Stress of planning my wedding ( I think)`9 a:b:I was born with what they had thought was a birth defect, where my right side of my face just didn't quite finish developing. ( so I was told). When I was 25 I noticed my "dent" getting worse. I actually went to a dermatoligist about my hands, because thec:Well I haven't been able to find any connection with Parry romberg and this but here goes. I have been seeing doctors for the pass year. Unexplained nausea...bad nausea that wakes me in the night..that comes and goes sometimes days or weeks non stop and tmd:dThink I just about covered everything, and then some! Thanks again! I hope I helped you in some way. e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9a@: Evelyn Dayman:31 Congewai Street:Aberdare:New South Wales : :2325: 02 49909149(:everex@optusnet.com.au is wrong~ 9K@ :Female :Right :& :Hemiparkinsonism Hemi Atrophy:Other : : :49 :499 : :9:Right :9:Right :9:Right ::Hazel :Hazel !:"9 #:$9 %9 &:'9 (:Both ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9 <: =:>9 ?:@9 A:B9nC:eI need to use daily Liquifilm Tears as I dont blink and my eyes get very dry if I dont use the drops. D:E9gF:^I stumble over the words that I am trying to get out,it feels like I lose control of my tongue G: H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9X: M y neiceY9 Z:[9 \: ]:^9 _:`9 a:b:I was diagnosed in December 1995 but the doctors that I have been seeing seem to think that It was mis-diagnosed back 1989 as Repitive Strain Injury. Back then the symptoms were pain in my right wrist/arm unable to carry briefcase in hand, pick up coffee c:My specialist Dr V Fung Neurology Department - Westmead Hospital - Sydney, New South Wales, Australia 2145 has told us that the general thinking is that it is possibility linked to a birth trauma- I was born with a heart condition - "Hole in the heart".d:I along with my husband have just finished taking part in a research programme with Dr Fung at the Westmead Hospital and have also been asked to take part in a world-wide Drug research programme which is to start in Feb/Mar 2002, the reason being to take  e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9a@: Heidi Febles :3160 Stratford Green Pl:Avondale Estates:Georgia :USA:30002: 404.713.3560":Heidi.Febles@cingular.com~ 9A@ :Female :Right : Parry-Romberg :: Skin Changes : : :17.5 :239:Right:Lower9 : :9 : :9 : ::Brown :Brown !:"9 #:$9~ %94@&:My doctors never diagnosed why I had seizures. I didn't know until I started reading that it might be related to Rombergs. I have not had one in a very long time.'9 (: ): *: +:~ ,94@-9.9~ /9@@E0:<constant pain starting at the base of my neck up to my eyes. 1:Both 2:639495969 7:89 9: ::;9<:i'm not 100% sure but the reason I have started researching again is because my dentist is asking me about the disease. He couldn't find anything on it. He feels like my alignment is off. =:>9D?:;my lips kind of go crooked on the side of my deterioration.@9 A:B9 C: D:E9 F:iG:`My face twinged every once in a while and I never thought about it until I started reading info. H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^94_:+headaches and the discoloration of my chin.`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9a@: Amy Bennett:7914 Pine Island Ct:Belmont:Michigan :USA:49306: 616-887-1629:abennett@otterbase.com~ 9@@ :Female :Right :En coup de sabre :: Skin Changes : : :22 :329:Right :Both9 : :9 : :9 : ::Brown :Brown !:"9 #:$9~ %9?@N&:E2 gand-mal and now semi-partial while on the anti-seizure medications'9 (:Arm ):Left *:1r+:i3 different... I have been try many different kinds and none are working to stop the seizures completely. ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9<:jitter =:>9?:twitch@9A:twitchB9OC:Fcan't handle bright light and my vision jumps and it is hard to focus. D:E9 F:G:Left-side has become weak over the past 6 months or so. My left hand grip is 20 lbs less then the right. Left hand index finger is gone numb and parts of my hand will also but unlike my finger it will come backH:zMy seizures are always on my left side. My face twitches on my left side but I have lost fat in my face on the right side. I:J9K9L9M9KN:Bangiogram of the brain where dye is shot to highlight the vessels. O:P9Q9R9S9HT:?IVIG - Immino Globine This treatment I am currently undergoing.U9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a:b:I was diagnosed my a team of doctors at the Cleveland Clinic Foundation in Cleveland, Ohio USA. I have given your website and report to them. Your patient sound a lot like what I have been going through. I started having Hemifacial switching since October c:|d:splease do not release my name or give an personal information without my permissions. Thanks for all your research. e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9 b@ :Sara : : : :USA : ::chrys@athenet.net~ 99@ :Female :Right : Parry-Romberg :: Skin Changes : : :17 :179:Right:Lower9 : :9 : :9 : : :Blue :Blue !:"9 #:$9 %9 &:'9 (:Both ):Both *:8 +:~ ,95@-9.9~ /90@ 0:1:Right 2:439495969 7:89 9: ::;9 <: =:>9 ?:@9 A:B9 C: D:E9 F: G: H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9#_:acne medication - accutane`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9`b@: Jocelyn Clark :: Toowoomba: Queensland: Australia :4350:46308290 :jmclark1@bigpond.com.au~ 9E@ :Female :Left :PFHA :Left Hemiatrophy: Eye problems : : :0 :09 :Left :9 :Left :9 :Left :9 : ::Green :Green !:"9m#:dNot so much the colour but texture. The left side is courser and thicker and the right is fine hair.$9~ %9@&:Scary especially when young. The onset was sudden. They weren't the most serious ones but enough to give me a headache when coming to.'9 (:Leg ):Left *:8*+:!Dilantin, Tegretol and Phenobarb.~ ,9@@-9.9 /9w0:nAfter I started eating and drinking Milo I get flashing coloured lights but not necessarily with the headache. 1: 2:39495969 7:89q9:hMy doctors have never heard of my condition - especially at Med school. They just did not know about it. ::;9<:My left side of my face was shorter which made my right middle tooth look more as though it was in the middle of my mouth. Boy did I get criticized for that. I still have a baby tooth left on the left side down the bottom. It is a very strong tooth. =:>9.?:%My mouth is shorter on the left side.@9dA:[Shorter on the left side, and particularly sensitive to pluck my eyebrows on the left side.B9|C:sMy left eye was affected and not developed properly especially the connections at the back of the eye to the retina D:E9 F:G:When I was pregnant with my second son Michael, I was given a epidural needle in my back on the left side. Well, he must have tried to at least three or four thunps before he had got it in. He (the anaethetist) could not believe what he was seeingH:but finally managed to get it in after nearly knocking me off the bed. The bone structure on that side seems different than the right. The nerves on the left side particularly sensitive especially if I get my legs waxed. I:J9K9L9M9 N: O:P9Q9R9S9T:There is no treatments. My mother was told by my family doctor when I was a baby to treat me like the other kids. This was the most obsurd and insensitive comment anyone could have said.U9MV:DBut my grandmother who I take after has a smaller left side as well.W9 X:Y9 Z:[9 \: ]:^9 _:`9 a:Vb:MMy left arm is a little tighter when I get really stressed or under pressure. c:9d:0I can't believe somebody wants to know about me. e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9b@:Lauren Couchoud:34 westlea Ave: Harrogate: Yorkshire :UK:hg2 0at :&:jason.couchoud@btinternet.com~ 95@ :Female :Right :En coup de sabre :: Skin Changes : : :13 :219:Right:Upper9 : :9 : :9 : : :Blue :Blue !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9 <: =:>9 ?:@91A:(fat has gone under half of my right browB9C:When I was 18 I developed optic nuritis. But a very atypical case. It VERY slowly progressed over a 6 month period- untill my once perfect sight was so far gone I could only tell light from dark. D:E9 F: G: H: I:J9K9L9M9N: LP - normal O:P9Q9R9S9T:Steriod drip. 1 gram a day for 3 days the reconstructive surgery was to close the gap of my missing lashes. I would like to know if it is possible to have reconstructive surgery for the fat missing in my brow and forhead.U9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a:b:When I was 18 I developed optic nuritis. But a very atypical case. It VERY slowly progressed over a 6 month period- untill my once perfect sight was so far gone I could only tell light from dark. After 2 treatments cycles of solumedrol, 1 gram a day for 3c:When I was 3 years old I lost my eyelashes on the right eye lid. I had no injury or noticable infection, they slowly fell out. and the eye lash folicals are also gone. A biopsy of my lid found scar tissue on the inside of the lid. No cause was determined  d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9b@:Bryan McDowell:6715 Crimson King Ct.: Indianapolis:Indiana :USA:46256: 317 577 8210":cmacmom@home.com is wrong~ 95@ :Male :Right :En coup de sabre :morphoea: Skin Changes : : :8 :219:Right:Upper9 : :9 : :9 : ::Brown :Brown !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9 <: =:>9 ?:@9 A:B9 C: D:E9 F: G: H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9\:~At age 8 a white line appeared down the middle of my forehead. We thought it was from being hit by a large stone a year before ]:^9 _:`9 a:b:An indentation on right on chin which causes the lip to drop slightly. Also a dent in jaw bone on right side. Forehead had indentation which also showed up as a slight valley in skull in CAT taken at age of 15. Forehead has continued depression from betwec:Doctors have decided to look at CAT taken 6 years ago. The only other measure being taken at this time is UVA therapy 3 times a week. The doctors seem to be leaving it up to us to find new research for treatment. They have diagnosed this as linear scerode d: e:If9g9h9 i:j9 k:l9m9n9o9p9~ 9b@: Alisa Sisk!:3621 Lebanon Church Road: Gillsville:Georgia :USA:30543: 770-535-0054:AlisaSisk@webtv.net~ 9C@ :Female :Right :linear scleroderma :en coup de sabre: Skin Changes : : :13 :359 :Left:Upper9 : :9 : :9 : ::Brown :Brown !:"9q#:hI developed a gray streak on the right side in my mid 20's - no other gray hair was present at the time.$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9 <: =:>9 ?:@9 A:B9|C:sI am far-sighted. The vision in my left eye has worsened over the past two years. My right eye used to be my worst. D:E9 F:G:I have had increased joint pain in the past year. Anti-inflammatory meds seem to help. My skin is extremely dry - my hands look very old. I have acne roseacea and wonder if it is related. H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9m_:dI lost my hair on my crown (about the size of a quarter) prior to developing depression of the area.`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9b@:Lauralee Pasko : : : :US : ::bpll@bellsouth.net~ 9@@ :Female :Right :En coup de sabreD :;hemifacial atrophy, en coup de sabre, localized scleroderma: Skin Changes:chronic Illiotibial Band Syndrome which could not be explained; en coup de sabre, nose and right side of face are slightly sunken : :12 :329:Right :Both9 : :9:Right :9:Right :Both:Brown :Brown !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9~ /9*@0:I don't know if I have migraines. I have headaches very often - sometimes so bad that I cannot concentrate on anything. I have never become nauseated though, but I have had difficulty looking at bright lights. 1:Both 2:239495969 7:89 9: ::;9 <: =:>9 ?:@9 A:B9wC:nI've had glasses/contacts since I was 6 years old. I'm not sure of my eyesight, but I think I'm legally blind. D:E9 F: G: H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9 X:Y9AZ:8aunt - fibromyalgia; sister - Raynaud's, osteo-arthritis[9T\:KI was in a car accident at age 16, and hit the headrest with my left cheek. ]:^9J_:AI honestly think severe stress is what has triggered my problems.`9 a:b:I have pain and stiffness if I do not stay active. I developed Illiotibial Band Syndrome a year ago from running and have been in physical therapy for a year trying to figure out why it won't go away. My rheumatologist told me the muscles and tendons in mc:I'm glad someone is researching this rare disease. My friends, family and co-workers can't believe I have some rare disease. My problems have been blamed on stress, but since I started researching scleroderma and Parry-Romberg, I think I've finally found  d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9c@:Annabelle Wood: 45 Hotham Ave: Boddington :WA: Australia :6390: 08 9883 8079 :dlclwaller@yahoo.com.au~ 9 @ :Female :Left :PFHA : Lipoatrophy: Skin Changes : : :0 :9 :Left :Both9 :Left :9 :Left :9 :Left :Both:Hazel :Hazel !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1:Left 2:439495969 7:89 9: ::;98<:/Adult teeth are not straight. Some are sideways =:>9 ?:@9&A:Very little hair, almost noneB9C:Blin in the right eye D:E9 F:G:Annabelle has a foot drop on her left leg. She also has an aneurysm in the carotid artery on both her left and right sides in her brain. She has a problem with the muscles in her left hand, which are slowly shortening, causing her fingers to curle over. H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9 c@: Sandra Lehman:21 Rutledge Avenue: Bartonville:Illinois :USA:61607:(309) 697-3012:Purzns1@aol.com~ 9G@ :Female :Right :En coup de sabre :: Skin ChangesW:Na circular patch of missing hair and then deep groove started down my forehead : :43 :449:Right:Upper9 : :9 : :9 : ::Brown :Brown !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9~ /9F@ 0:1:Right 2:439495969 7:89 9: ::;9 <: =:>9 ?:@9 A:B9 C: D:E9 F:0G:'joint pain in fingers, elbows and knees H: I:J9K9L9M9pN:gdovonex cream for 2 years didn't help PUVA treatments for 4 months didn't help Plaquenil for 1 week now O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9@c@: Gokhan Ceylan=:4Fatih Mahallesi Meltem Sok. B1 Blok D:9 Kucukcekmece:Istanbul ::Turkey:34650: 0212 5807702:ceylan_hakan@yahoo.com~ 96@ :Male :Right : Parry-Romberg :: Skin Changes : : :18 :219:Right :Both9 : :9 : :9 : ::Brown :Brown !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9 <: =:>9 ?:@9$A:Hair loss on right eyebrowsB9 C: D:E9 F: G: H: I:J9K9L9M9 N: O:P9Q9R9S9T:Actually I don't know that what kind of tablets I am using. I am writing the prescription. . Flamtadin . Contra ctu bex . Gastrosidin This is the only treatment the doctors have suggested although they agreed on that these tablets and creams can't treat tU9 V:W9 X:Y9 Z:[9\: fell on chin. ]:^9_:stress`9 a:b:First of all, I would like to thank you for your informative website and help. I want to explain my situation. I am from Turkey. I realized that I have an illness four years ago. First symptoms were hair loss on my head. Then a skin part on my right side  c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9`c@:Henrik Thrling:Dr Forselius Backe 9: Gothenburg ::Sweden:S-413 26: +446031411488:henthor@hotmail.com~ 9;@ :Male :Right :Romberg. :%'en coup de sabre' has been mentioned: Skin Changes : : :13.5 :16.59 :Left:Upper9 : :9 : :9 : ::Hazel :Hazel !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:899:Have never heard that word, doctors haven't given me a name for it. It's not a unbearable sort of pain, it's an ongoing "sensation" like a low noise (if that makes any sense). It's exclusively concentrated to the left side of my forehead and skull. ::;9 <: =:>9 ?:@9A:Have lost nearly all of left eyebrow. This have progressed gradually in my 20s. What remains is a few number of hairs (nearest to my left ear so to speak).B9C:Hard to say, I began wearing glasses at 22. My eyesight is worse on my left eye compared to the right. But I don't have major problems with sight. D:E9 F:CG::My left nostril was disfigured (sort of "cleft" above it). H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a:b:It's important that my name won't be used... aside from that you have my permission to use whatever I state in this survey. If there are any further questions you might have concerning my condition, please send me a mail. c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9c@: Amlie Lozeau:2436 Coleraine:Montral:Qubec:Canada:H3K 1S4: 514-933-0962!:amelielozeau@hotmail.com~ 96@ :Female :Left :Romberg :: Skin ChangesF:=Loss of a little spot of hair, eyebrow (alopecia) and eyelash : :5 :149:Right :Both9 : :9 : :9 : ::Green :Green !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9 <: =:>9 ?:@9+A:"Loss of the right eyebrows at 5 yoB9 C: D:E9 F:G:wI don't know if it was already mentioned, but I lost the angle of my inferior jaw and my jaws were not closing properly H: I:J9K9L9M9 N: O:P9Q9R9S9T:I had fixation of silicone on my forehead, molded to the appropriate shape, 6 years ago: a success for me I had realignment of both jaws (the surgeon fractured both jaws, realign them and immobilized them for 3 weeks)U9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9c@:Maria Battaglia: P.O Box 317: Misenheimer:North Carolina :USA:28109:(704)-463-1360:mpb@pfeiffer.edu~ 94@ :Female :Right : Parry-Romberg :: Eye problemsw:nA large surface vien appeared on my forehead, and I had very poor eyesight in my right and perfect in my left. : :3 :59:Right :Both9 : :9 : :9 : ::Hazel :Hazel !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9~ /90@V0:MThrobbing pain on right side of my head, but doctors have not described them.1:Right 2:339495969 7:89^9:UI always thought it was due to the Parry Rhombergs so I haven't seen a doctor for it. ::;9<:I have braces now, I had to wait til I was 18 to get them because they thought they might have to break my jaw, but they didn't. =:>9.?:%It's a little thin on the right side.@9 A:B9,C:#20/100 in right eye, 20/13 in left. D:E9)F: Atrophy to right side of tounge. G: H: I:J9K9L9M9N:yI had a lot of testing when I was young, but I don't remember the speciic ones. I know it wasn't any of the one's listed. O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9c@:C. Moody : : :MS :USA:38901 ::moody5@network-one.com~ 9 @ :Male :Left :Romberg :Hemi-facial atrophy: Skin Changes : : :4 :59:Right :9 : :9 : :9 : ::Other :Other!: camouflage"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9 <: =:>9A?:8blue tint to that side of lip--looks like hit in the lip@9 A:B9 C: D:E9 F: G: H: I:J9K9L9M9#N:all tests have been normal O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a:b:yI have been told that there is no treatment for this disorder. We have been watching it for 4 years with gradual atrophy. c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9c@:Brian:123 Fake Street: Mission Viejo :Ca :USA:945548 :: blah@blah.com~ 9.@ :Male :Right :PFHA : :1:(growth defect on left side of whole body : :0 :09 :Left :Both9 :Left :9 :Left :9 :Left :Both:Green :Other%!:right: Half green half brown"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9#<:missing tooth on left side =:>9 ?:@9 A:B9 C: D:E9 F:G:Deviated septum H: I:J9K9L9M9 N: O:P9Q9R9S9T:Growth Hormone TherapyU9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9d@:Amy Michelle Becker:3261 Paprika Court: Cincinnat :OH :USA:45251: 513-674-7827:ambecker@cinci.rr.com~ 9=@ :Female :Right :linear scleroderma :: Skin Changes : : :7 :109 :Left:Upper9 : :9 : :9 : : :Blue :Blue !:"9 #:$9~ %9(@ &:'9 (: ): *:8 +:0~ ,9.@-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9 <: =:>9 ?:@94A:+I have very little hair in my left eyebrow.B9 C: D:E9 F:G:I also have atrophy of the left side of my nose and several bald places in my scalp. I also have anisicoria - my left pupil tends to be larger than my right. H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a: b: c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9 d@:Catherine Parramore=:438 harrier park, east hunsbury, northampton, NN4 0AG: Northampton : :U.K. :: 01604 702305 :~ 9D@ :Female :Right :En coup de sabre :morphoea: Skin Changes : : :26 :269:Right :Both9 : :9 : :9 : : :Blue :Blue !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0:1:Right 2:4394959697:severe ache around the right eye and cheek - this is the side of the face that is affected by the scleroderma. Apart from forehead involvement the right side of my face is atrophied. I came across Parry Rombergs by accident and think it fits my symptoms. 89)9: Right side - as described above. ::;9<:Bone loss on root of front teeth and some loss of gum tissue. Damage occurred during last pregnancy -dentist is unsure whether pregnancy of scleroderma is to blame. =:>9 ?:@9 A:B9 C: D:E9 F: G: H: I:J9K9L9M9 N: O:P9Q9R9S93T:*biopsy of scar tissue to confirm diagnosisU9 V:W9X: maternal auntY9Z:mother is getting progressively more and more disabled with a neurological condition that doctors have been unable to diagnose. She has had it for at least ten years and it has the appearance of motor neurone and multiple sclerosis.[9 \: ]:^9_:Possibly first pregnancy. First noticed symptoms when baby was 6 months old. I have four children and there seems to be a pattern of remission and then flare ups during and after the births.`9 a:b:I have seen a number of consultants as I have moved to different areas. I no longer see the consultant at my local hospital as he gives the impression of being totally disinterested in my case. This is a very lonely disease and it is sometimes painful to  c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9@d@:Deborah D. Fambry:1329 Cathy Way:amelia :ohio :USA:45102: 513-943-1722:fambryd@hotmail.com~ 9@@ :Female :Right : Parry-Romberg* :!vitiligo, pigmatation of the skin : : : : :9:Right :9 : :9:Right :9 : : :Blue :Blue !:"9.#:%hair on right side temple line silver$9~ %9@ &:'9 (:Arm):Right *: +:~ ,9@-9.9~ /9@,0:#like a stabbing pain behind rt. eye1:Right 2:7394959697:black outs where i quite breathing , and had seizuer type activity ,this was between ages 3-5, then between ages 5-7 sever headachs behind right eye that became almost a weekly occorence , more sever each time. ,at age 7 right eye lid ,browl,lashes, and t89 9: ::;9<:????? =:>9 ?:@9A:right one is silverB9C:vision in rt is worse D:E9 F:`G:WDuring teen age years I would have urges to throw myself to the floor and jerk around ,H:In mid 20's had headach so sever required hospital er care and CT was done. developed hair loss in one spot on right side, joint swelling, abnormal LFT, Cronic fatigue,shortly after this episode I:J9K9L9M9EN:<eeg as a child ,ct as a child and then as a adultct was done O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9?\:6as a teen ager 13 feel off hourse and got a concussion ]:^9 _:`9\a:S?????was never tested but had to have a tick surgicaly removed?? aprox age 3-5yearsb:During teen age years I would have urges to throw myself to the floor and jerk around , In mid 20's had headach so sever required hospital er care and CT was done. developed hair loss in one spot on right side, joint swelling, abnormal LFT, Cronic fatiguec:struggled in school, had to study very hard to just make c, trouble with consentration, I would learn something then not know it the next day.wd:nI have worked in the medical feild now for 13 years as a medical assistant , and have yet to get a correct DX: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9`d@:Monica M. Seiberling:207 East School Street:Thorp: Wisconsin :USA:54771:(715) 669-7629!:seibers@discover-net.net~ 9:@ :Female :Right : Parry-Romberg ::Epilepsy:I started having episodes where my right arm would go numb (starting at my finger tips travelling up my arm) and then the right side of my face would go numb._:VThese episodes lasted about 20 minutes. I was later diagnosed with Jacksonian Epilepsy :12 :159 :Left:Upper9 : :9 : :9 : : :Blue :Blue !:"9 #:$9~ %9(@p&:gAs mentioned previously, I would experience parathesias on the right arm and the right side of my face.'9 (:Arm):Right *:8S+:JTegretol XR 400mg 2x/day (I recently discontinued this med after 10 years)~ ,93@-9.9~ /9(@*0:!flashing in my eyes, bad headache 1:Left 2:839495969 7:89 9: ::;9 <: =:>9 ?:@9 A:B9 C: D:E9 F: G: H: I:J9K9L9M9N: Angiogram'O:Tegretol; propranolol; aspirinP9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9 _:`9 a:b:MRI and CT findings consistent with "lacunar type infarctions of the left thalamus, anterior limb of the left internal capsule, anterior portion of the left external capsule, and gray/white junction of the left frontoparietal region." I was immediately pu c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9d@: Ellen Foley ::Milford :Ohio :USA : ::pandadog@fuse.net~ 9C@ :Female :Right : Parry-Romberg :Hemi-Facial Atrophy: Skin Changes : : :33 :359:Right:Lower9 : :9 : :9 : ::Hazel :Hazel !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9 /9 0: 1: 2:39495969 7:89 9: ::;9 <: =:>9 ?:@9 A:B9 C: D:E9 F: G: H: I:J9K9L9M9 N: O:P9Q9R9S9 T:U9 V:W9 X:Y9 Z:[9 \: ]:^9_:How about stress?!`9 a:b:I know that I am an unusual case as I developed P-R's later in life than what I think is typical. It developed very slowly and it took about 4 years to be completed (if it is). I have only fat loss on the right side of my face, no muscle or bone loss, so  c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9~ 9d@: Shannon Bird:13125 Candiada Rd.: prince George ::Canada :: 1250-964-3810$:perfect_littl52@hotmail.com~ 9(@ :Female :Right : Parry-Romberg :: Skin Changes : : :3 :49:Right :Both9 : :9 : :9 : ::Green :Green !:"9 #:$9 %9 &:'9 (: ): *: +: ,9-9.9~ /9&@n0:eI usually have them when I get stressed or am just felling really hot or cold or when i just blackout 1:Both 2:239495969 7:8939:*on my right side usualy around my forehead ::;9+<:"makes me hae a very wierd overbite =:>9%?:the right side is slanted up@9 A:B9 C: D:E9 F: G: H: I:J9K9L9M9 N: O:P9Q9R9S9T: MethotrexateU9 V:W9 X:Y9 Z:[9 \: ]:^9_:I go see the rombergs connection and most peple who have it have been injured in some way like with me I got attacked bytwo dogs just before I started seeing signs of it`9 a:b:I go see the rombergs connection and most peple who have it have been injured in some way like with me I got attacked bytwo dogs just before I started seeing signs of it c: d: e:f9g9h9 i:j9 k:l9m9n9o9p9BXb> o S  x H 9 p  - >@   dMbP?_*+%&A Page &PMnEpson Stylus COLOR 740 ESC/P 2C odhhLetter0DINU"0`ẇ `OSPEAAq"dhh??U} %%8} &'PPT0PPPPPPPP P$ P P$ P$ PP$PP$PPPPGPPPPwPPPGPPGPPPut on email nag listExclude Part 2 ID HAD completeKnows blood groupLock Jawinfo about cold hands Name Ethnic origin  Occupation  Blood Group Rhesus Lupus  Scleroderma RARaynauds MS IBDThyroid Ank SpondEye inflammationAsthma CFS DepressionVitiligo Cold HandsProblems with JawInfo about JawOther Medical Problems$Ever stopped or slowed downHow old when stopped$Anything make it slow down?$ More about stopping factors!Ever speeded up"How old when speeded#Pregnant when speeding"$Anything make it speed up$%More about speeding factors &Other speed slow things'Speeders( Number ops )Fat* Fat outcome+Silicone,Silicone outcome -Flap. Flap outcome /Bone0 Bone outcome1 Trigeminal2Trigemina outcome3Other4 Other details5 Other outcome6 Other surgery 7HAD1 8HAD2 9HAD3 :HAD4 ;HAD5 <HAD6 =HAD7 >HAD8 ?HAD9@HAD10AHAD11BHAD12CHAD13DHAD14ELine?F Corner of EyeGMiddle of EyebrowH Near middleI Jaw / CheekJ Chin indentKSeverityL Anxiety ScoreMDepression ScoreNOLine and Cheek or Chin~ 6@Not as bad now but had terrible problems with feet and hands from a teenager. Colour in hands didnt change but were often very cold then very hot at other times. Feet would change colour also legs seem to have terrible circulation at times, particularly w Eileen Burnsscottish  self-employed part time     |PROBLEMS WITH CLICKING ETC HAD PROBLEMS RECTIFIED A FEW TIMES WITH I THINK IT WAS AN OSTEOPATH AND CRANIAL SACRAL THERAPIST.Had quite a few episodes during ME where whole body would go numb a heavy weight like a sort of paralysis. Had an inclident when I was on antibiotics seem to go into a sort of hallucination, my sister and mother found me on floor with my chin and arm slig5,It seem to stop when I was a child about 10. !0"'Unsure but no obvious dramatic changes.#$S%JThe problems regarding eye etc did appear after chroonic fatigue syndrome.&When I am ill people say visually it is more noticeable although visually people generally dont notice as I have very slight atrophy .'~ ()*+,-./0123"4Problems with front teeth5Somewhat Successful6Z7?@????@DEFGHIJK Very MildL5@5?M NO~ 7@I do not have Lupus, but my mother does have a form of it. (she doesn't have the butterfly rash) I do not have rhuematoid arthritis ( although my mother's side of the family has a very strong history); I do have osteoarthritis in my hips ( I was born with Mandy PerroAmerican  wife/mother  A   Had TMJ; has orthoganathic (?) surgery to pull out the upper jaw ( alot ) & lower jaw. I have 'the smallest adult mouth" that most dentist & anesthiologists have ever seen. I have a very small opening when I open my mouth the most that I can.I have a history of mastoid disease on left side (PRS side) & profound hearing loss on that side as well. Have migraines--seem to be centered in left temple mostly. I was born at 7 months gestation, weighing 2.5 pounds. Having vision problems in my left eJ Awhen I had the jaw surgery in my 20s, that seem to exacerbate it.!" see above#$%surgery &'~ (@)*Somewhat Successful+,-./0Somewhat Successful1234bone grafted from my scalp to left eye orbit. When they attempted to implant a non-bone cheek bone, my body rejected it & they had to remove it. I was also left with a dark dimple underneath the eye. 56Z7??????????@?DEFGHIJ KMildL5(@5@M NO~ 8@Tammy Loretta FlemingScottish  Teachers aide     Eyesight and hearing is fading on the affected side of face. Inner ear infections have become a problem in the past few years, once again only on the affected side. 8 ! "25#$:%1STRESS,(not enough sleep, emotional upheval,ect.) &'~ ($@)*Somewhat Successful+,-./01234In the late 70's early 80's I had many collagine injections. these were useless as the collagine would disappear in about 3 days.5 Unsuccessful6Z7?@@?@?@@DEFGHIJKSevereL5&@5 @M NO~ 9@Erik R. Copeland2)White (English, Irish, Scottish heritage) student  A     15? !"#$ %'~ ()*+,-./0123 46Z7?@???DEFGHIJ KMildL5*@5"@M NO~ :@Especially during the winter months (some mornings get to -4 degrees) my hands will be like blocks of ice and the rest of my body beautifully warm. My right hand can be colder than the left at times. For instance, today is a very mild to warm day and my rPip Rutherford Australian  Sales Rep  A Negative  I ticked "yes" for Ankylosing Spondylitis. I think I mentioned to you before about my back problems and operation. I had spondylolisthesis which resulted in a fusion and instrumentation at the L5-S1 and a laminectomy. So I do not know whether they are oneIn my early teens !"#$ %'~ (@)* Successful+,-./01234Fat was taken from my stomach and implanted in my right cheek area (just like stuffing a chook!!) Extra fat was implanted because over a period of about 12 months it subsided. The operation was an experiment (29 years ago)because the doctor did not know h5 Successful6I came beack to this spot after seeing the pictures. I have shrinkage of my right thigh with thinning of the fatty tissue. This was originally diagnosed as scleroderma after a biopsy was done. So my question is "Is there a connection with scleroderma and Z7??DEFGHIJKModerateL5@5@MN~ O?~ ;@I have suffered from Asthma since I was 5 after having whooping cough and pneumonia (I hope that spelling is right). It isn't severe though. Julie BassettEuropean. %Human Resource/Training & Development  O Positive  ZQI do have times when I get some joint pain on my affected side but not too often.Gallbladder problems (Gallbladder removed 5 years ago) Back trouble (L5 disc disease) I also have odd teeth - on the related side, I have a molar which has one prong instead of four although one dentist says he thinks it is actually my wisdom tooth as I dAbout 19 It's hard to tell but I did try a homeopathy treatment and large doses of vitamin B (injections once a week for 6 weeks, I'm not sure on the amount but could find out if you're interested)!"#$ %'~ (?)* Successful+,-./0123 46Z7DEFGHIJ KMildL5@5M NO~ <@ Mitchell Hyde australian     MDjaw has gone out of shape. teeth don't close properly on right side.right eye has sunken back a bit and dose'nt close properly somtimes ,when he is asleep. having trouble with his mouth. dribbleing uncontrolable. xome trouble drinking from cup.. %after treatment, already talked about!"four and a half#$%'&we sent info with first survey'~ ()*+,-./0123 46Z7@@?@@??DEFGHIJ KMildL50@5?M NO~ =@Maecil Maris HiltonAmerican-- German! retired-was bank officer       !"#$ %'~ (@)* Unsuccessful+,-. Unsuccessful/0123%4Silicone implant on forehead5Somewhat Successful6Z7??@?@@@??@??DEFGHIJKSevereL5&@5@M NO  ~ >@   / &My hands tend to get cold very easily.  Lucian Smith  caucasian military AB -                 My blood type is AB-, but I could not select this above. I do have a problem with my left eye becoming dry because my eyelids do not completely close.  22   ! " # $ %| &sMy rombergs seems more pronounced in direct correlation with the amount of sleep I get. Less sleep, more pronounced '~ (@ ) * + , - .Somewhat Successful / 0 1 2 3 46Z 7@?@???D E F G H I J KModerate L5 @5M N~ O?  ~ ?@     Jenifer Reaveley Gleed Canadian , White Student B Negative                " Healthy No other problems  11 J ANot sure If the medications are the reason or not. Methaltrexate. ! " # $ %'~ ( ) * + , - . / 0 1 2 3 46Z 7???D E F G H I J KMild L5$@5@M NO  ~ @@     Kimberley McMichael. %Caucasian- (German, Swedish, English)$ Speech Language Pathologist A Positive                 a gestational autoimmune disease- antiphospholipid antibodies during pregnancy The antibodies effect the blood's clotting factor causing it to clot more quickly which results in the babies low birth weight and possible miscarriages and blood clots in the    16 and 30  decrease in stress, and active exercise, It began at 15 when I hit puberty. After my body adjusted to the new hormones the disease seemed to stop a year later. During the first year of the disease I lost tissue under my eye with hyperpigmentation, but no  ! "age 25 and also age 29 # $ %zpreganancy-possibly related to hormones again and stress, lack of exercise and poor diet all seems to cause it to speed up &I feel that regular exercise and stress reducing exercise like yoga have a significant impact on improving circulation and increasing immunity and causing the disease to slow down. Also.... I feel that improving my diet by limiting animal meats and produc '~ ( ) * + , - . / 0 1 2 3 4I am scheduled to have alloderm insertion. Alloderm is an inert sterilized skin in which the cells have been removed to avoid a reaction. Alloderm is now being used instead of silicone. My surgeon feels that fat injections which he used in the past were n 5 6|I will send you an email about the success of my surgury in November as it takes about 2 months for the swelling to go down.Z 7????D E F G H I J KMild L5(@5@M N~ O?  ~ @@     Michelle MacLellan  Caucasian Insurance Salesperson  Negative                  Approx 22 years old   ! " # $ %'~ (@ ) *Somewhat Successful + , - . Successful / 0 1 2 3 4I have had a muscle flap implant in my cheek. The muscle was harvested from my right leg. It is also the right side of my cheek in which has atrophied. I also had a small dent in my forehead. She used a artificial implant for this area. The operation took 5 Successful` 6WNOTE: My 2nd Cousin has been diagnosed with Scleroderma and my mother has Fibermyalgia.Z 7?@@??@?D E F G H I J KModerate L5 @5@M NO  ~ A@    (written by Meagans' mom, Ellen) Meagan has trouble with her extremities, poor circulation? Her fingers/hands get chilled easily and turn very white Meagan Elizabeth Lee- $White, Irish/French/English Heritage none  Negative                 Epilepsy, currently under treatment with Neurontin. Left side impairment(lack of right brain function), facial atrophy, dental work done (braces & retainer) to correct teeth alignment. Headaches (migrane-type), counseling for depression. Trial of medicati  17   ! "9 # $? %6rapid growth (age appropriate) onset of periods maybe. &'~ (? ) * + , - . / 0 1 2 3 4Meagan had a heel-cord lengthening (left leg) to improve her gait and make her be able to walk better (her foot more flat to the ground) she was becoming rapidly unable to run and limped badly. We tried a brace for over a year to stretch out her leg. 5Somewhat Successful 6Z 7@?@?@??@@@@D E F G H I J KModerate L5@5M N~ O?~ A@Kathleen GoodspeedWhite/American. %Vocational Counselor/Graduate Student  B Positive  ulMy jaw sometimes remains open and is exceedingly painful and I need to physically shut my mouth with my handHeadaches, severe body aches and exhaustion - which usually occurs with the headaches in the fall. Okay this is a wierd one. After my last surgery which was 15 months ago I broke out into a severe outbreak in my genitials. They thought it was Herpes but I'off and on and then progresses Hard to tell - I just went to the doctor and he said that my cartlidge in my nose is being reabsorbed. It appears to progress in the fall and stop in the late winter!,"#22 after I had my son it went crazy#$%My disease had stopped at the coup de sabre and when I became pregnant or after I delivered I lost the whole side of my face relatively quickly &'~ ($@)*+,-. Successful/01234Tissue expander - unsuccessful- infection - many revisions as the disease continues to progress. Much to do with my nose. Also a lip flap. 56Z7???@DEFGHIJKSevereL5&@5?MN~ O?~ B@JAMy hands are usually cold and sometimes have a tingling sensation Adele LiuItalian/American Teacher       late 30's !"#$%Stress&Truthfully, I have no idea what provokes the continuing atrophy. My CT scan revealed that even my sinuses have atrophied. And I feel the atrophy is continuing. In part, that my be a factor in why a reconstructive surgeon will not perform corrective surger'~ ()*+,-./0123 46Z7@???@???@??DEFGHIJKSevereL5$@5@MN~ O?~ B@I suffered from post operative depression on several occasions and clinical depression at other times. In regard to Asthma; this was instigated when I suffered with severe Pneumonia in 1992.Jennifer van Gemert AustralianA 8Student at present/Graduate Diploma of Primary Education  A   wnThis occurs randomly and without warning although it is worse when it is cold. It is not a frequent occurance.1986 Herpes Simplex (orally)requiring hospitalisation 1990 Ingrown toenail operation (infection) requiring hospitalisation 1992 Wisdom teeth removal requiring overnight hospitalisation 1997 Glandular fever with associated hepatitis requiring hospitalisati<313 and then started again at 15 stopped again at 17 ! "15#$x%oI do believe that weight gain or loss (gain in my case) makes a big difference to the appearance of the atrophy &'~ (@)*Somewhat Successful+,-./0 Successful123 46Z7??@?@?DEFGHIJKModerateL5(@5@MN~ O?~ C@ Yvonne McLane$Caucasian - American Indian Real Estate Sales  A Negative  I have had to recently be treated for my left jaw locking. I first went to my primary care physician and he could not do anything for me so I was treated by a Chiropracter. He unlocked my jaw and relieved the pain.This begins when I was 14 - had surgery at 16 for scleroderma en coup de sabre. A period of approximately 5 year of seizures in my 30's - hystrorectomy for hardened uterus when I was 37 - scarring of my cornea - and arthritis in several joints. 19Q HMassive injections of B-12 directly into affected area - scalp, forehead! "16#$%6&-I take only daily doses of vitamins and herbs'~ (@)*+,-./01234removal of scleroidal section of scalp on left side - 14 yrs old removal of hardened appendix - 35 years old removal of hardened uterus - 37 years old5 Successful6This has been an ongoing struggle all my life. Believed to be triggered by severe trauma to area of head where scleraderma first appeared.Z7????@DEFGHIJKModerateL5@5@MN~ O?~ C@Karen E.A. Smith caucasian( behaviour management specialist  Yes Positive  pain in the left side of my jaw and it has tempoararily locked on occassion .. nothing severe or long - lasting ... just enough to cause concern then disappear again!suspect: bullous lung disease last winter ... saw a specialist who determined that there was little to be concerned about... did not confirm that diagnosis. !"#$ %'~ ()*+,-./0123 46Z7?@?@@@@?@?@@??DEFGHIJ KMildL55MN~ O?~ D@ Lory BriccoWhite Registeres Nurse  O Negative  My jaw does "lock up" briefly from time to time - also, I tend to "gring" my back teeth - not while asleep, but I while I'm awake."approx 33-35 years of age? 6Plaquenil therapy appeared to slow progression of sx's! "currently (43years old)#$U%LI'm no longer taking plaquenil - I suspect this is why the sx's have sped up& none known'~ (?)*+,-./01234The doctor did surgery on my "good eye" (right)to make it appear more symmetrical to my affected eye (right) - It did make my eyes more symmetrical, but now my right eye appears to be receding again and my eyes are about as asymmetrical now as they were b5Somewhat Successful6Z7????DEFGHIJK Very MildL5@5@MN~ O?~ D@ Kathryn Large6 -Administrative Assistant Construction Company      started 4 ended 4 !"#$ %'~ (@)*+,-.Somewhat Successful/01234silicone implant for cheekbone - also had surgeries to remove excess tissue. Was always around 100 lbs. Now am 120 so face put on weight and sagged - bummer. Need facelift or removal - going to get second opinion - surgeon concerned about nerve damage wit5 Successful6Z7DEFGHIJK Very SevereL5@5@M NO~ E@Cal. MayWhite automotive painter       !"#$ %'~ (?)* Unsuccessful+,-. Unsuccessful/0123 46Z7???DEFGHIJKModerateL5&@5@M NO~ E@e\I have always had cood hads-I have carpul tunel and sonetimes my hands turn blu-black color.Mary Diane Sprayberry united States  housewife     my left side(face-leg-foot-arm and hand has gone numb and my right foot also. no medical reason yhat the dr's can findi have high blood pressure-controled with medication !"#$#%After birth of first child &'~ ()*+,-./0123 46Z7??@@@?@@DEFGHIJKModerateL5@5M NO~ F@ Marie Winget Caucasian5 ,house wife / "Hallmark" card clerk part time  O Positive    !"#$ %'~ ($@)*Somewhat Successful+,-.Somewhat Successful/0Somewhat Successful123 46Z7?@??@???@DEFGHIJKSevereL5?5?MN~ O?~ F@ Sandra ShawIrish caucasian& Medical Laboratory technician  O Negative  zqI would rate it as moderate. My jaws crack every time I open my mouth but it's because my jaws are an uneven size Possibly ~ 18 years old !" 14 years old#$I%@Probably just a growing spurt, that may have emphasised it more. &'~ (@)* Unsuccessful+,-. Unsuccessful/0123 456One of the reasons I was given for the lack of success by the surgeon was that the site where they took the flap/graft from (on my back, same side as the affected side of my face)seemed to have smaller than expected blood vessels. Near this site I also haZ7DEFGHIJKModerateL55M NO~ G@ Jayne MessiasEnglish Registered Nurse  O Positive    Mild atrophy to left cheek, no further sign since derma fat graft but new atrophy has begun in my hairline over last year ( just above my coupe de sabre )!"#$ %'~ (@)* Successful+,-./0123 45n6ederma fat graft, donor site lower abdo, fat injections post to tidy up a few depressions around graftZ7????DEFGHIJK Very MildL5&@5@M NO~ G@Jennifer L Reese caucasian  Homemaker  O Positive  ?6My jaw will lock up when eating, talking, and yawning.  23! "17#$%&It seemed to speed up in my late teens and then slowed down in my early twenties. We can't really associate anything specific causing the rate of proggresion to speed up or slow down'~ (?)*+,-.Somewhat Successful/0123 456I had the surgery as a temporary solution when I was 13 years old. They suggested that I wait until adulthood before having a more permanent procedure. At 21 I found a group of docters in my area to perform reconstructive surgery, however my insurance denZ7??@?@??@?@@???DEFGHIJKSevereL5$@5 @MN~ O?~ H@ colder than most - bothAngela Mary SherningEuropean local mushroom farm     Jaw locks when yawning ! "35#$ %no &'~ (4@)* Unsuccessful+,-. Successful/0123C4:Eye operation - brought eye out enough to stop it watering5 Successful6Z7?????@?DEFGHIJKSevereL5@5?MN~ O?~ I@it's incredible that you mention this: in fact: i've always sufferd from very very cold hands and the nails turn into a blue color: and people always retire their hands when they shake mijne!! Ines Braham#i don't like this question student  A  Pos    15 !"#$ %'~ (?)*Somewhat Successful+,-./01234the doctors hed sliced a piece of my chin to make it seem more symmetrical and then in an other operation they've injected fat: but the results are not very concluding, and also i have to have another operation to reinject fat.5Somewhat Successful6Z7@?@@?DEFGHIJKModerateL5@5M NO~ I@1(My mother suffers from Raynaud's diseaseSylvie Adele HalseyEnglish  School girl  O Positive  wnDaunes syndrome (hope the spelling is correct) Constant runny nose as an infant leading to removal of adenoids !"#$ %'~ (@)*Somewhat_successful+,-./0123 46Z7????@DEFGHIJ KMildL5@5?M NO~ J@ZQusually my hands and feet are colder than anyone elses. especially in the summer.Andrea Bodenberg) German/French/Pennsylvania Dutch  Event Planner  A Negative  jaw was too small for my teeth. had to have braces because of buck teeth and many teeth pulled because my jaw was too small for all my teeth. even had my lower wisdom teeth out at the age of seven.fourteen {the doctor that i have been seeing said that the disease's course usually runs about ten years. mine, however, took twelve.!"#$ %'~ (?)*Somewhat Successful+,-./0 Successful123w4nthe second surgery was to shave down my jaw bone (actually my rib) because it hadn't rounded off within a year5 Successful6Z7?@??????DEFGHIJ KMildL5 @5@MN~ O?~ K@Nicholas RossyLebanese Student     Just to let you know, I am filling this in for my 14 year old son, Nicholas. He was fortunate in that the coup de sabre seemed to stop on its own. He is undergoing treatment to repair the damage thru a series of fat injections, and with a cream to remove  10 !"#$ %'~ (@)*Somewhat Successful+,-./0123 456Depending on this last injection, the doctor may remove some additional fat and inject more, as he is not convinced artificial injections will be more successfu.Z7DEFGHIJK Very MildL5.@5"@M NODlv^x90.i"P PT0!P"P#P$P%P&P'P(P)P$*P+P$,P$-P.P$/P0P$1P2P3P4PG5P6P7P8Pw9P:P;PG<P=PG>P?P  ~ K@    YEARS AGO I NOTICED MY HANDS WOULD WRINKLE UP LIKE VERY OLD HANDS THEN GO NORMAL WHEN I WAS YOUNGER. MY FINGERS ACHE SOMETIMES AND YES HAVE FELT COLD OFF AND ON EVEN IN THE SUMMER. I HAVE ALSO EXPERIENCE NUMBNESS IN THE HANDS  Ann Dundon BRITISH ADMINISTRATOR/SALES A                 I HAVE ALWAYS HAD THE JAW PROBLEM. MY PLASTIC SURGEON HAD SAID THE JAW IS NOT CONNECTED AT ALL. I KNOW IT IS. IT CAN BE VERY PAINFUL AND WORSE WHEN I AM STRESSED OUT. I CLENCH MY TEETH A LOT THIS DOES NOT HELP. THE INSIDE OF MY MOUTH IS DIFFERENT FROM THE EYES, STOMACH, PAINFUL JOINTS, BACK PROBLEMS, HEADACHES, NECK PROBLEMS, DEPRESSION (ALL IN THE MIND OF COURSE, ACCORDING TO THE DOCTORS).     ! " NOT REALLY # $ % &MY ATROPHY SEEMED TO HAVE STOPPED BEFORE I HAD ANY OPERATIONS. (BEFORE 37 YEARS OF AGE) AFTER THE 3RD OPERATION THE ATROPHY CAME BACK, THIS TIME AROUND THE EYE SOCKET, TEMPLE,MOUTH AND ITS SEEMS LIKE THE SIDE OF MY HEAD AS WELL. I AM NOW 44 AND HAVING WOR '~ (@ ) * + , - .Somewhat Successful / 0 1 2 3 45 6AFTER HAVING THE OPERATIONS I AM SOMEWHAT MISTIFIED AS TO WHETHER WHAT PAIN IS DUE TO THE PROCEEDURE OR THE ONGOING ATROPHY. I STILL HAVE A LOT OF PAIN IN THE FACE. I DO NOT KNOW IF THE ATROPHY IS ACTUALLY EATING THE MUSCLE IMPLANT UNDERNEATH AS THE AFFECZ 7@?@@??@?@??D E F G H I J K Very Severe L5@5M NO!!~ !L@!!!!!Deborah Mitchell;!2Australia - Irish, Welsh, English, French, Spanish! Public Servant ! B! Positive! ! !!!!!!!!!!!!!!Quite severe spasms from 12 to 40+ - haven't had one for a while now (I am 46). Mouth used to snap shut with no warning - I often bit the inside of my cheek or tongue - very painful 'knotted muscle' at temple on my affected side - and I couldn't open my m!I have small cysts - forearm, palm, and abdomen - about 5 all up. Doctor said they were nothing to worry about. After a recent health check at my work - I was referred to my doctor as my cholesterol was so low it didnt register on the machine. Doctor orga!!About 30!! !! !"No!#!$ !%'~ !(@!)!*Somewhat Successful!+!,!-!.Somewhat Successful!/!0!1!2!3 !46Z!7?@?????D!E!F!G!H!I!J!KSevere!L5$@5@M !NO""~ "L@"""""Missy Thompson"american/white"  pharmacist " A" Positive" " """""""""""""""The eye on my affected side has been irritated for the last 2 months. I have been to 2 eye doctors and neither has been able to find anything wrong.""I don't remember"" "! ""32"#"$"%I had my first reconstructive surgery on my forehead then became pregnant 3 months later so I am not sure which was the reason for the speed-up. I was also pregnant at 18 but did not notice any change at that time. "&'~ "(@")"*"+","-"."/"0Somewhat Successful"1"2"3 "46Z"7??@?@??@@???D"E"F"G"H"I"J"KModerate"L5@5?M"N~ "O?##~ #M@####I'm always cold, more so than just my hands. It has to be nice and hot for me to be comfortable. It is not just that I feel cold, I am cold to the touch. My fingers always go a waxy yellow/white when they are cold.#Laurene Stanners#United Kingdom origin2# )Intelligence Operator - Canadian Military # A# Positive# # ###############I've never been diagnosed with immflammatory bowel disease as such, but I've had a problem since birth with my bowels. Most of my childhood I had constipation problems so much so that my parents had to physically help me go to the bathroom when I was a ch#+#"I believe it stopped about age 30.## #!#"Between 25 - 27###$#%xIt may have been because of weight training as I lost a lot of body fat at that time, and thus it became more noticeable #&'~ #(?#)#* Unsuccessful#+#,#-#.#/#0Somewhat Successful#1#2#3#4Three orbital props were inserted and then removed as they caused double vision. My left eye is no longer propped up yet I now have double vision. It was extremely unsuccessful, and only caused more problems. Carved off some of left lower jaw bone. It was#5 Unsuccessful#6I was suppose to have some ear carilege used to build up the inside of my left nostril so that I could actually get better oxyen intake, but it was never done. After the other disasterous surgery, I've never been keen for another surgeon to touch me.Z#7?@?@????@?D#E#F#G#H#I#J#KSevere#L5@5@M#N~ #O?$$~ $M@$$$$$ Jason Subt/$&Finnish-from mother Syrian-from fatherQ$ HRemodel Houses and attending college, in hopes of an architecture degree $ A$ Positive$ $ $$$$$$$$$$$$$ $$ $13$$ I wasn't taking part in any treatment because at the time there was none known. At least according to the doctors at the Mayo clinic in Houston Texas$!$"$#$$ $%'~ $(@$)$*$+$,$-$.$/$0$1$2$3 $46Z$7???D$E$F$G$H$I$J $KMild$L5&@5&@M $NO%%~ %O@%%%%% Nicola Wyatt%White%  Housewife % A% Negative% % %%%%%%%%%%%%% %%!%maybe about 16 years old%/% &Maybe the contraceptibe combined pill?%! %"26%#%$%%After childbirth possibly when hormones are settling back into routine. When not on the pill. Noticed a dentation in my cheek bone area so went back on pill (and now fingers crossed) seems to have stopped.%&At times of stress ie bereavement, house move, I experience pain in the areas affected on my l.h side of face. Could this be a trigger?%'~ %(%)%*%+%,%-%.%/%0%1%2%3 %46Z%7@@@?@?D%E%F%G%H%I%J%KModerate%L5@5?M %NO&&~ &P@&&&&My hands do get very cold all the time. It seems like if I am sitting for a small period of time, they get that way, they also turn red, or sometimes a yellowish tint.& Shawn Fox&White/Caucasian-& $Front Office Assistant/Dental Office &  & & &&&&&&&&&&&&&&&Yes, my loss of hearing in my left ear. The Iritis this past winter kind of made me wonder where I got that from. I had Iritis in my Left eye. I also have a slight asthigmatism in my left eye. Sometimes,my left eye twitches, my right one does not.&&I was about 17 or 18&& My doctor said it should stop when my face stops growing, and I had my surgery when I was 18, it had seemed to have stopped at that point&!&"&#&$ &%'~ &(?&)&* Successful&+&,&-&.&/&0&1&2&3&4When I was about 11 Years old, I had a surgery on my left ear to repair a perferated ear drum. about 6 months after that surgery, I started loosing my hearing, then I started noticing a change in my facial features, such as the atrophy on my left side. Wh&5Somewhat Successful&6Z&7@@@??@?D&E&F&G&H&I&J&KModerate&L55M &NO''~ '@P@'''''Amber Lekay Covin'white - caucasion' being a 4 year old kid ' A' Negative' ' ''''''''''''' ''''' yI can not tell at this point what Amber's atrophy is doing. I do not see any visible differences than when she was three.'!'"'#'$ '%'~ '(@')'*'+','-'.'/'0'1'2'3 '46Z'7D'E'F'G'H'I'J 'KMild'L5@5?M 'NO((~ (P@((((When I lived in the Midwestern portion of the U.S., Chicago, I always had cold hands and feet. I live in Arizona now and, at my age of 52, NOTHING is cold. Ha Ha( Karen Feutz-($1/2 Hungarian, 1/4 Irish, 1/4 German( Administrative Asst (  ( ( ((((((((((((((Sometimes, it seems like the left-side of my face/jaw gets "stuck" i.e. if I yawn or when I chew something hard, it feels like it sticks. But I've never been unable to fully open or close my mouth.(I have not been diagnosed but I think I have fibromyalgia. Everyday, my bones and my muscles ache. I have quite a bit of pain in the back of my neck, my wrists, my knees, my elbows; all the joints. I was tested for rheumatoid arthritis several years ago b(( Late teens(5( ,Just seemed to stop as quickly as it started(!("(#($(%(&It seems that the onset was at about age 9 and it stopped by age 16 or so. I started having surgery at age 14 so I don't know if that stopped the progress.('~ ((@()(* Unsuccessful(+(, Successful(-(. Unsuccessful(/(0 Unsuccessful(1(2(3(4Had silicone injections with a silicone implant to take the place of the unsuccessful bone implat for left cheekbone. Silicone implant still in place and good.(5 Successful(6I had a series of silicone injections in 1982 consisting of between 50 - 100 injections each during 6 separate treatment dates. Initially I was elated at the results. I looked the closest to normal that I ever did. Now, I have a slight concave spot on lefZ(7????????D(E(F(G(H(I(J(KSevere(L5"@5@M (NO))~ )Q@)))t)kThey seem colder than most people's, my feet suffer from the same problem. No colour changes have been seen) Dianne Lennox) New Zealander) Nurse ) O) Negative) ) ))))))))))))))f)]I do have diverticulitis. Apart from one acute attack, it has not really caused any problems.))13-14)) )!)")#)$ )%'~ )(4@)))*)+),)-).)/)0)1)2)3 )46Z)7???@D)E)F)G)H)I)J)KModerate)L5@5@M)N~ )O?**~ *@Q@***** Robert Clarke'*Born England, Parents Jamaican-* $Financial Planner/Investment Advisor *  * * *************/*&I have muscle spasms from time to time***** *!*"*#*$ *%'~ *(@*)***+*,*-*.Somewhat Successful*/*0Somewhat Successful*1*2*3 *46Z*7?@?@@@??@D*E*F*G*H*I*J*KSevere*L55M*N~ *O?++~ +Q@+++++ Susan Niles<+3Irish, English, German, French, and American Indian+ School Teacher +  + + +++++++++++++6+-Right perforated Temporomandibular Joint disc+Vertigo, two bouts of feeling like I was being pulled to the left while attempting to walk. I was given medication, beta balancer (?) and eventually went away after several weeks.++Age 11++ +!$+"Age 3 and stopped at age 11+#+$+%A possibility of having pneumonia prior to the onset of PRS and then moving from St. Louis, Missouri to Miami, Florida at age 3 1/2. A new environmental change.z+&qI lost the sight of my left eye at age 23. Eighteen months after the birth of my daughter. No changes since then.+'~ +(@+)+*+++,+-+.+/+0+1+2+3a+4XStrabismus surgery of the left eye at age 48, 25 years after sight loss of the left eye.+5 Successful+6Z+7@@@?@@@?D+E+F+G+H+I+J +KMild+L5@5?M +NO,,~ ,R@,,,,I have had some bowel problems. Mainly soft stools and I used to have alot of urgent diarhea before changing my eating habits. I had a colonoscopy and the doctor said everything looked fine. As far as the eyes, I have alot of skin problems, mainly in the ,Donn CammarataS,JHalf Italian, Irish,English, scottish,Dutch...A tiny bit of American india ,  , , ,,,,,,,,,,,,,g,^Only the appearence of my chin now.............it is about a 1/4 inch higher on the left side.,Segmental nephritis as a teenager. Tonsilectomy as a child. Inguinal Hernia surgury within the last yr and a half. I fell on the back of my head as a child, suffered a concusion,,,, ,!,",#,$ ,%'~ ,(?,),*,+,,,-,.,/,0,1,2,3 ,45F,6=I was recently diagnosed and have not looked into surgery yetZ,7??@?@????????D,E,F,G,H,I,J ,KMild,L5$@5"@M ,NO--~ -@R@-----Sally VanRaemdonck1-(Caucasian- Irish, English,French, German- Legal Assistant -  - - ---------------Joint pain Fatigue-- Late 20's-- -!-"-#-$ -%'~ -(-)-*-+-,---.-/-0-1-2-3 -46Z-7D-E-F-G-H-I-J-KModerate-L5@5@M -NO..~ .R@..... Corey Lemoine&.french- Canadian European Jew. student . 0. Positive. . ............. .. .9.P. Gpossibly methotrexate injections ??? don't know if it would have anyway.! ."7.#.$ .%'~ .(.).*.+.,.-.../.0.1.2.3 .46Z.7@D.E.F.G.H.I.J.KSevere.L5@5@M.N~ .O?//~ /R@////For years I have noticed that my hands were always cold and would kind of look blue or purplish as well as certain parts of my face and lips when it was cold out. My one friend used to call me a smurf./Diane/white/ stay at home mom / 0/ / / ///////////////I have spine scoliosis,my left eye is slightly crossed but can control it(lazy eye) My vision in the left is 20/100 my right is 20/20 ans slightly far sighted. I don't have eyelashes on the bottom of my right eye./ /17// /!/"/#/$ /%'~ /(?/)/*Somewhat Successful/+/,/-/.///0/1/2/3 /45/6I had fat injected in my face taken from my stomach. It was fairly successful although only about 15% stayed and the rest was absorbed. I was going to have reconstructive sergury but found out I was pregnant and decided to forget it.I did have collegen inZ/7@??@?????@D/E/F/G/H/I/J /KMild/L5@5?M /NO00~ 0S@00000 Jodi Quelle0White0 Court Reporter 0  0 0 00000000000000Currently, my jaw is constantly aching. I often open and shut my mouth just to relieve the tightness. As far as "lock jaw", only when I was 16 (1986) did I have an episode of something similar. I had a terribly high fever and was very sick and my jaw just0Ever since birth, I was constantly ill with tonsillitis and colds, often losing my voice for all of winter. Finally, in 1995, I had my tonsils removed and have been fine since. In 1997, I went to the doctor for numbness in my feet. They had scheduled me f0000 0!0"0#0$0%0&Smoking seems to exacerbate the problems and sensations. I quite smoking and may smoke just one occasionally when stressed. I run faithfully and lift weights and do toning exercises with some Yoga and sports. That seems to help a great deal as far as the 0'~ 0(?0)0*0+0,0-0.0/0001020304My operations were unrelated to this disease. I just found out about this disease only 22 days ago and did not realize there were even courses of therapy, treatment or surgical procedures available. I have just begun my research regarding this. 056Z07?@@???@?D0E0F0G0H0I0J 0KMild0L5@5@M 0NO11~ 1@S@111I1@my fingers are becoming white (sometimes red) when its very cold1Michel Laetitia1francaise (europeenne)1  infirmiere 1 A1 Positive1 1 1111111111111 11111 1! 1"301#1$C1%:the stress (I was doing examens when it comes on the face) 1&'~ 1(@1)1*1+1,1-1.1/10111213 146Z17@@?@???D1E1F1G1H1I1J1KSevere1L55M1N~ 1O?22~ 2S@2222#2Madeleine de Rauville-RaalF2=White South African (English mother and South African father).2 %Advertising / Full time mother of two 2 O2 Negative2 2 22222222222222When my PRS was at its worst (in and around 1987 when I was 20 years of age), I would have muscle spasms/cramps in my jaw. My jaw would lock in a terribly painful muscular spasm (the muscles along the jaw and the whole cheek area would seem to lock/knot iA28No - nothing else - otherwise perfectly healthy and well2*2!28 (10 years after it had started22 2!52",No, but it was at its worst from 1987 - 19902#2$2%f2&]No - to me it just had to run its natural course. Nothing helped speed it up or slow it down.2'~ 2(?2)2* Unsuccessful2+2,2-2.2/2021222324It's not surgical but a procedure (x3) whereby restylane and perlane products have been injected into the affected / depressed area under local anaesthetic. I think this has been good for me as mine is only a soft tissue problem ie bone is fine. We don't 25 Successful26Z27@??@@???@?@D2E2F2G2H2I2J2KModerate2L5&@5@M 2NO33~ 3S@333O3FI am thin and have always been told it is from inefficient circulation3 Kyla Meyer!3German, Turkish, African3 student 3  3 3 3333333333333O3Fnot exactly but ove the years I am able to open my mouth less and less,3#anorexia nervosa, sinus infections,3333 3! 3"253#3$|3%sI don't know if it's related but the syptoms seemed to speed up during a time of unrelated extreme emotional stress 3&'~ 3(?3)3*3+3,3-3.3/30313233 346Z37@?@?@???@D3E3F3G3H3I3J3K Very Mild3L5@5?M 3NO44~ 4T@44444 Lorin Marlowe4White4  minor child 4 B4 Negative4 4 4444444444444424)difficulty falling asleep, staying asleep4444 4! 4"84#4$ 4%'~ 4(4)4*4+4,4-4.4/40414243 446Z47??@@@@@??@??D4E4F4G4H4I4J 4KMild4L5&@5@M 4NO55~ 5@T@555o5fIm very sensitive to the cold, my hands sometimes turn white/blue and if i get really cold i feel sick5Adrienne Wilson!5New Zealand Maori/Pakeha5 University student 5 A5 Negative5 5 5555555555555 55 51555 5!5"5#5$ 5%'~ 5(5)5*5+5,5-5.5/50515253 546Z57@?@&@??@?D5E5F5G5H5I5J5KModerate5L5&@5@M5N~ 5O?66~ 6T@66666 Mary Toledo6German6  IS-Technical 6  6 6 6666666666666.6%I do have spasms sometimes in my jaw.66 65-666 6!*6"!It started very aggressively at 36#6$ 6%'~ 6(@6)6*Somewhat Successful6+6, Unsuccessful6-6.Somewhat Successful6/60 Successful61626364I have had my nose straightened with the use of ear cartilege. Had my lower eyelid thickened a bit with some of the skin from my upper eyelid. Had my upper lip thickened with grafting from the lining of my mouth. I have probably forgotten some of them.65Somewhat Successful66Z67?????D6E6F6G6H6I6J6K Very Severe6L5@5?M6N~ 6O?77~ 7T@77777Natasha GeddieZ7QAustrian & Irish (biological father) French & Cherokee Indian (biological mother)=7 4Sr. Litigation Paralegal, musician and music teacher 7 A7 Positive7 7 77777777777777As stated in Part I of the survey, a neurologist (Alan Naarden, M.D.) ordered an MRI of my jaw in January, which reflects severe degeneration of the jaw bones which he interprets as a severe case of TMJ. I have been referred to a dentist to see about gett7I am being treated for bi-polar manic depression. I have also been treated for marijuana dependence. I was initially diagnosed with severe depression in 1991; I did not know until last summer that feeling like I am on the top of the world with endless ene7&714 - started then and stopped77 7! 7"377#7$ 7%'~ 7(4@7)7*Somewhat Successful7+7,7-7.Somewhat Successful7/707172737475Somewhat Successful76Recovery is taking A LOT longer than the surgeon said it would. The surgery did take longer and was more extensive than he originally planned, also. He said he had to 're-do' it after he'd done it the first time, because the flesh wasn't the proper color.Z77??@???@@@?D7E7F7G7H7I7J 7KMild7L5$@5@M 7NO88~ 8U@88888 Hyunjin Lee8Korean8  researcher 8 A8 Positive8 8 8888888888888 88 82488 8! 8"268#8$68%-I think.. Fatigue and stress make it speed up 8&'~ 8(?8)8*Somewhat Successful8+8,8-8.8/80818283 846Z87??@?@@???D8E8F8G8H8I8J8KSevere8L5(@5?M 8NO99~ 9@U@99999Petra R. Medina9Spanish-American!9 Administrative Assistant 9 B9 9 9 9999999999999 99 910?99 9!9"9#9$q9%hI really didn't pay attention to how long it took, how old I was, or whether it stopped or speeded up??? 9&'~ 9(?9)9*9+9,Somewhat Successful9-9.9/9091929394piece of foam shaped to fit over my right side by my ear and jawline at age 18 in addition to fatty tissue taken from my stomach to fill in around nose and cheek-bone down95 Unsuccessful96eventually the "piece of foam" has shrunk and broken up and I think is still in by my jaw someplace; it seems to be hanging in the throat area immediately below the jaw kind of in a lump. I guess I just forget it's there and have never thought about havinZ97??@?????D9E9F9G9H9I9J9KSevere9L55M9N~ 9O?::~ :U@:::::Craig Mitchell:: Software Engineer :  : : ::::::::::::: :: :16:: :!:":#:$ :%'~ :(@:):*Somewhat Successful:+:,:-:.:/:0:1:2:3s:4jHad excesive fat after graft (expecting some absorption) and went for a type of lipo to remove excess fat.:5Somewhat Successful:6Z:7?????@D:E:F:G:H:I:J:KModerate:L5@5@M :NO;;~ ;V@;;;;;Rose M. Goodman;Germany / Irish&; sales - construction industry ;  ; ; ;;;;;;;;;;;;;;Sometimes it tightens up so much in the afflicted area that you can see the tension and it hurts!I have to try and stretch it just like a cramp in any other muscle.;;/;&based on photos, it was active 5 years;; ;!;";#;$;%;&Was a healthy child - first noticed at age 13 and it progressed so slowly that as first the damage was not noticible to my family. Per photos, seemed to have stopped at age 18;'~ ;(@;);* Successful;+;,;-;.;/;0;1;2;3;4Surface laser to smooth out the deep furrows. It did make a difference, however, the part where the muscle still shows (chin closest to the center)is noticible when I move my mouth. In most people this area has "padding" but mine does not so you see the m;5Somewhat Successful;6Z;7???D;E;F;G;H;I;J ;KMild;L5@5M ;NO<<~ <V@<<<<<Beth McAllister<white< child <  < < <<<<<<<<<<<<<<[<RPsoriasis (on scalp). That's what we thought caused her bald spot a long time ago.<,<#we think it is stopping now - at 10<< <!N<"ELast year at age 9 was a dramatic year of development of this disease<#<$<%<&Just a growth spurt?<'~ <(@<)<*<+<,<-<.</<0<1<2<3 <46Z<7?????D<E<F<G<H<I<J<KModerate<L5@5@M<N~ <O?==~ =V@=====D.Garvin!=scottish,english descent=  hairstylis = A= = = ============= == =28=z= qi had a dermis graph inserted into my cheek and chin. i have not noticed anything more and that was 14 years ago.=!T="Ki had 2 pregnancies between age 23 and 26 which is when it was at its worse=#=$=%it could have been the pregnancies or maybe it was the timing of having it for so long and it had just about burned itself out i am not sure. =&'~ =(?=)=* Unsuccessful=+=,=-=.=/=0=1=2=3k=4bi had a silicone prothesis inserted but i had it removed later because it looked and felt strange.=5 Unsuccessful=6Z=7???@?D=E=F=G=H=I=J =KMild=L5.@5@M =NO>>~ >W@>>>>The first time I diagnosed way back in 1976, the plastic surgeon had me see an opthalmologist, he told me that I had debris in my right eye. He gave me steroid drops, never saw him again. When I was 30, 11 years later, I needed to wear glasses, my eye doc> Mary E. Lydon> Mostly Irish > cook > O> > > >>>>>>>>>>>>>X>OOccasionally the muscles under my jaw will cramp, it is just a momentary thing.x>oI had two grand mal seizures when I was 44. I mistakenly called them petit mal on the first part of the survey.>>>q> hThe atrophy seemed to occur almost overnight when I was 15, it has not changed significantly since then.>!>">#>$ >%'~ >(@>)>*>+>, Successful>->.>/>0>1>2>3>4I recieved 11cc of liquid silicone in my cheek and chin in 1974. Dr. Joseph Murray of Peter Bent Brigham Hospital in Boston MA (now known as Brigham and Womens Hospital), was participating in a goverment sanctioned test on silicone injections. He was the >5 Successful>6Z>7?@@???D>E>F>G>H>I>J >KMild>L55M >NO??~ ?@W@???D?;My hands are always cold. They are never clammy, just cold.?Siomara M. Laguna?Central American"? Preschool Teacher/Student ?  ? ? ????????????? ????i? `I had reconstructive surgery, so I am not sure if it ever slowed down because I have an implant.?! ?"19?#?$ ?%'~ ?(??)?*Somewhat Successful?+?,?-?.?/?0Somewhat Successful?1?2?3?4I have had cranial reconstruction and around the orbit of the eye. The first surgery was not successful because the orbit made my eye shift and made my eye look worse than before. I have also had to have eyelid surgery because there was too much scar tiss?5 Unsuccessful?6Z?7?????@??D?E?F?G?H?I?J?KSevere?L55@M ?NODlsR F"_Q,=L@PT0APBPCPDPEPFPGPHPIP$JPKP$LP$MPNP$OPPP$QPRPSPTPGUPVPWPXPwYPZP[PG\P]PG^P_P@@~ @W@@@@6@-HAVE SWEATY PALMS(NOT SEVERE), AND COLD HANDS@Serene Oh Hwei Fern@CHINESE@ NURSE @ B@ Positive@ @ @@@@@@@@@@@@@@FEEL TIGHTNESS OF THE LEFT JAW. SOMETIMES WHEN I OPEN MY MOUTH, I CAN FEEL THE JAW MOVING UP AND DOWN (MECHANICALLY). COULD NOT OPEN MY MOUTH BUT RELIEVE AFTER TAKING PHENYTOIN AND ANAREX@I'm Serene Oh from Singapore. I think I've missed out something which may or may not be relevant. I had a lipoma removed in late 1997. It's located near my right scapular. Guess that's about all. Really hope to hear from you soon.@@@@ @!@"@#@$@%@&I DON'T SEE THE SPEEDING OR STOPPING, BUT I OBSERVED THAT I'VE INCREASING HEADACHE AND TIGHTNESS OF MY JAW WHEN I'M STRESS, OR EMOTIONALLY CHARGED, OR SMILE/LAUGH EXCESSIVELY@'~ @( @@)@*@+@,@-@.@/@0@1@2@3 @46Z@7@????@D@E@F@G@H@I@J @KMild@L5"@5@M @NOAA~ AW@AAAAA Natalie BruAHispanicA Sales Associate A  A A AAAAAAAAAAAAA AAAAA A!A"A#A$ A%'~ A(@A)A* UnsuccessfulA+A,A-A.A/A0 UnsuccessfulA1A2A3A4A5 UnsuccessfulYA6PThese type of surgery only lasted a couple of months, now my symptoms are worse.ZA7@????@????DAEAFAGAHAIAJAKModerateAL5&@5?M ANOBB~ BX@BBBBB Mary CampB Caucasian3B *Stay at home Mother, formally a journalistB B PositiveB B BBBBBBBBBBBBBBSometimes I find it difficult to chew on the left side. This is not due to pain or stiffness but just a general lack of strength/mobility.BBB13 or 14B7B .Onset of menstruation and reaching full growthB!B"late 20sB#B$B%I believe pregnancy reactivated the atrophy, but am not absolutely certain of that, because the area affected (chin) had fat grafts in the 1970s and it has also occurred to me that what I am seeing is a deterioration of those grafts and a reverting back t B&'~ B(?B)B*Somewhat SuccessfulB+B, UnsuccessfulB-B.B/B0B1B2B3 B46ZB7?????DBEBFBGBHBIBJBKSevereBL5$@5@MBN~ BO?CC~ C@X@CCCCC Diana MannCCockneyC Garden Designer C AC PositiveC C CCCCCCCCCCCCC#CCan't open mouth very wideCProper Iritis - goes to Moorfield. Depression after parents died (not to do with face). Gallbladder, Hysterectomy, general ill health (seems unrelated)C C11CC C!C"C#C$C%C&Didn't notice anythingC'~ C(@C)C*Somewhat SuccessfulC+C,C-C.Somewhat SuccessfulC/C0C1C2C3C4Right ear stuck out (pinned back). Tried to alter shape of eye in one operation. Arm to face pedicle in 20's. More embarassed by arm and abdominal scars. Rhinoplasty x 3 C56ZC7??@@?DCECFCGCHCICJCKSevereCL5$@5@MCN~ CO?DD~ DX@DDD|DsI don't believe I have color change but frequently I have cold fingers especiallly the fifth fingers on both hands. DMartha M. Hollingsworth/D&Irish, Indian, German, Italian mixtureD dental hygienist D OD PositiveD D DDDDDDDDDDDDDDA couple of times in my early twenties I had what was thought to be a TMJ dysfunction. I clinch my teeth now. Also, I appear to have somewhat short root structure of my teeth on radiographs.DDDDD D!D"D#D$ D%'~ D(9@D)D*D+D, UnsuccessfulD-D.Somewhat SuccessfulD/D0D1D2D3 D46ZD7@???????DDEDFDGDHDIDJ DKMildDL5"@5@M DNOEE~ EX@EEEEEPatricia Del MercadoE caucasianE Registered Nurse E AE PositiveE E EEEEEEEEEEEEEESLight malocclusionUELPolymyositis resulting from an anti-depressant "Serzone" Anxiety. Scoliosis.EEEE E!E"E#E$ E%'~ E(@E)E*Somewhat SuccessfulE+E,E-E.E/E0E1E2E3,E4#gore-tex implant and cheek implantsE5Somewhat SuccessfulE6ZE7@?@@@@??@???DEEEFEGEHEIEJEKModerateEL5*@5"@MEN~ EO?FF~ FY@FFFFI tend to be cold all over. I have plenty of "padding" (I'm overweight), but I still seem to always be cold. Occasionally when I get extremely cold extremities, my hands seem to appear whiteFKathy S. McCormickFIrish American&F Nuclear Medicine TechnologistF F PositiveF F FFFFFFFFFFFFFFI've had TMJ. On occasions when I yawn, my jaw would lock open. I have since learned to yawn "off center" to avoid having my jaw lock.FI have very severe allergies to mold, fungus, dust, smoke, pollen, grass and trees - - - mostly mother nature. I've been treated with oral meds (currently 10mg QD Zyrtec and started taking allergy shot 1 year ago. My allergist, Dr. Gailen Marshall, said hFFFF F!F"F#F$F%F&It seems as though I did not develop PRS until I was about 40 to 41 years old. It seems to have progressed (very slowly) since then and since it is slow, I can not tell if the Plaquenil has made any difference.F'~ F(@F)F*F+F,F-F.F/F0F1F2F3 F46ZF7?DFEFFFGFHFIFJ FKMildFL5@5,@MFN~ FO?GG~ G?GGGGGTheresa Hildebrand+G"American of Irish & German descentG  Library Clerk G BG PositiveG G GGGGGGGGGGGGG GGGGG G! G"NoG#G$G%G&Jon, this is a tough question because it is hard to tell whether facial changes take place because of the natural aging process or from the atropy advancing.G'~ G(G)G*G+G,G-G.G/G0G1G2G3 G46ZG7@?@???DGEGFGGGHGIGJGKModerateGL5@5?M GNOHH~ H@HHHHHJanette NorrisHAustralian-WhiteH Student H OH H H HHHHHHHHHHHHHHAH8Petit mal when I was younger. Also I suffer from excma.HH 16 years oldHH H!H" 12 years oldH#H$ H%'~ H(@H)H*Somewhat SuccessfulH+H,H-H.H/H0 SuccessfulH1H2H3 H45\H6SI had to have artificial bone inserted as my skull was thin in parts due to RombergZH7@@@@??@??DHEHFHGHHHIHJHKModerateHL5"@5@M HNOII~ I@IIILICfingers and toes become cold and numb quite easily when not active.I Rita Bietry+I"American born, parents from PolandI Medical office nurse I BI PositiveI I IIIIIIIIIIIIIIThe jaw will become lodged in a certain position. This does not happen often but it does happen suddenly. I have learned to just relax myself and my jaw and it will relax the muscles.Ii suffer from headaches both sinus, tension and migraine. It seems I have a headache of some degree every day. Most of them are treatable with sinus medicine and motrin. Occassionaly the migraine needs Medrin.I also have a sensitivity to flickering lightsII 40 years oldII I!I" 32years oldI#I$I%zIt started after my second pregnancy. I noticed a darking spot on my right eye develop before the facial changes occurred. I&'~ I(?I)I*Somewhat SuccessfulI+I,I-I.I/I0I1I2I3I4I had one fat implant operation that was somewhat successful except that the implant 'took' a little off the mark. I have also had two auto fat injections that did not last very long at all. The fat was reabsorbed quite rapidly. I56ZI7??@?@?@???@@?DIEIFIGIHIIIJIKModerateIL5"@5@M INOJJ~ J@JJJJJElizabeth TaylorJenglish/scottishJ customer service rep J BJ NegativeJ J JJJJJJJJJJJJJ JJJabout 6 or 7 i thinkJJ J! J"NoJ#J$ J%'~ J(@J)J* UnsuccessfulJ+J,J-J. UnsuccessfulJ/J0 SuccessfulJ1J2J3 J46ZJ7@@??@?@?@?@??@DJEJFJGJHJIJJJKSevereJL5 @5?M JNOKK~ K@KKKKKTammie D. StammersK caucasianK  K BK NegativeK K KKKKKKKKKKKKK KKKKK K!K" early 20'sK#K$ K%'~ K(6@K)K*Somewhat SuccessfulK+K,K-K. SuccessfulK/K0K1K2K3 K46ZK7??@??@??@?DKEKFKGKHKIKJKKModerateKL5@5@MKN~ KO?LL~ L@LLLLL Nicole TullyLIrish, ScottishL student L  L L LLLLLLLLLLLLLL9L0Severe sinus infections on affected side of faceLLLL L!L"L#L$ L%'~ L(@L)L*L+L,L-L.L/L0L1L2L3 L46ZL7???@DLELFLGLHLILJ LKMildLL5@5M LNOMM~ M@MMMMMy toes often loose their feeling and go purple or extremely white (like there is no blood getting to them). Both my GP and accupuncturist said I have Raynauds phenomenon / disease in a mild form (I believe this is the loss of circulation to extremities. M Susan EmeryJMACaucasian (both parents & all grandparents etc. are from England)M Call Centre managerM M NegativeM M MMMMMMMMMMMMMoMfI get really sore spots at the angel my jaw opens and closes. Sometimes so sore I can't even touch it.MM Mearly 30's. I am now 37MM M!M"M#M$ M%'~ M(M)M*M+M,M-M.M/M0M1M2M3M4I had a plastic surgeon who felt it was safer and more feasible to make the healthy side look more similar to the unhealthy side. He did a complete facelift and took fat away from the healthy eye lid to give more of an even appearance. So it was a cut froM5Somewhat SuccessfulM6I still have a fairly flat dent on my left cheek where all I see is bone. Skin is very thin on that cheek bone. Left eye is more sunken than right eye.ZM7@@@?@@?DMEMFMGMHMIMJ MKMildML5@5?M MNONN~ N @NNNNN Clare FlaxmanNenglishN  bookkeeper N  N N NNNNNNNNNNNNNuNlMy mouth doesn't open very far .... the jaw doesn't stretch much. also my lower right teeth are falling out.pNgI am on medicine for depression. Last year my 46 year old husband died. we were married for two months.NNabout 35 perhaps.NN N! N"32N#N$0N%'being pregnant I feel really sped it upN&when I'm tired it is more obvious. When I[m very stressed it seems to speed up. I think it went active again last year when my husband died.N'~ N(N)N*N+N,N-N.N/N0N1N2N3 N46ZN7@@@???@??DNENFNGNHNINJNKSevereNL5@5MNN~ NO?OO~ O"@OOOOO Angela BrightOwhite O RN O AO PositiveO O OOOOOOOOOOOOO OO O28OO O!O"O#O$ O%'~ O(?O)O* UnsuccessfulO+O,O-O.O/O0O1O2O3 O46ZO7@??????DOEOFOGOHOIOJOKModerateOL5@5@M ONOPP~ P$@PPPPP Manuel PueblaPLatinP Student P AP PositiveP P PPPPPPPPPPPPPPSometimes my jaw is locked and it's a lot of strain as I feel there is some kind of cramp in the muscles of my neck and below my toungue. Usually happens when I'm nervous or in a stress situation; also in cold environments.GP>When I was a toddler I had bronquitis (is it spelt that way?).P@P7No, I am not even sure if it stopped but I guess it didPP The athrophy became more and more evident as the rest of my body developed normally, but as far as I'm concerned it stopped in my early teens (about 14 years old).P!P"P#P$ P%'~ P(@P)P*P+P,P-P.P/P0P1P2P3 P46ZP7??@?@@?@?DPEPFPGPHPIPJPKSeverePL5 @5?M PNOQQ~ Q&@QQQQQ Marilyn NealQ CaucasianQ  Housewife Q OQ PositiveQ Q QQQQQQQQQQQQQQI have muscle spasms in my Romberg's affected jaw muscle. When I was diagnosed at age 16, the spasms were quite severe. As I have grown older, the spasms are still there but not to the same degree. Now I get quick little spasms that cause me to bite the iQI have tissue loss on my side above my waist on the Rombergs affected side. It is a deep crease there. It has not caused me any medical problems that I know of.Q*Q!I feel it stopped in my late 20'sQQ My atrophy took most of the tissue on my right side cheek and chin. I also have bone loss in my forehead and temple areas and around my eye. My atrophy was a very slow process over many years. It started around the age of 9 and had burned itself out in myQ!Q"Q#Q$ Q%'~ Q(@Q)Q* SuccessfulQ+Q,Q-Q. SuccessfulQ/Q0 SuccessfulQ1Q2Q3 Q45RQ6II do not believe it is possible for surgeons to give us perfect symmetry.ZQ7@?@@?@@@??DQEQFQGQHQIQJQK Very SevereQL5@5@MQN~ QO?RR~ R*@RRR_RVI think it's because I'm a smoker. My dermatologist does not think that it's Raynauds.RAndrea M. RodriguezRwhite8R /Production Manager for Screen Printing Division R  R R RRRRRRRRRRRRRR~Had TMJ for over 3 years now. My dentist, orthodontist and oral surgeon do not recommend anything other than wearing a splint.RLet's see, where do I start. Allergies is first and foremost. I have seen and opthamologist because of a pseudo tumor behind my left eye. (The affected side) I also had a problem earlier this year due to many headaches. For the most part, I get sick reallR R17RR R!R" around 19R#R$SR%JPossibly stress, I had just left college and took on a 40 hour a week job. R&'~ R(@R)R*R+R,R-R.R/R0R1R2R3 R46ZR7????@??@?@??DRERFRGRHRIRJRKSevereRL5@5@MRN~ RO?SS~ S,@SSSSSJo-Ann D'AngeloSItalian American.S %International Compensation Specialist S  S S SSSSSSSSSSSSSSSI did see a US recognized immunologist who had a interest in Parry Rombergs and she did extensive blood work. She explained that my blood work showed signs of immunologic disorders but not enough that I would be fully diagnosed with one. I usually have a S S24SS S! S"21S#S$[S%RIt may have gotten worse during a pregnancy but I honestly cannot say for certain. S&'~ S(?S)S*S+S,Somewhat SuccessfulS-S.S/S0S1S2S3 S46ZS7@??DSESFSGSHSISJSKModerateSL5@5@M SNOTT~ T.@TTTTI was diagnoised with Raynauds phen. about one year and extreme tiredness before the fat on the right side of my face almost totally disappeared.T Pam UnReinTWhiteT Legal Secretary T OT PositiveT T TTTTTTTTTTTTTTI would get muscle spasms under the right jaw since I was 16 years old and I still have them on occasion, I am 39. When the muscle would relax the jaw would not feel so tight, it would come on when yawning widely or sometimes chewing foods.TAt age 8 I had an ulcer, 11-colitis, at 15-I had a fatty tumor (benign) removed from the left side of my chin, almost immediately after that surgery the rt. side of my chin did not look right, I went through 2 more surgeries from a plastic surgeon at age TTnot really, because the face changes so much from intake of salt to hormores that unless it is a major change it is hard to tellTT T! T"23T#T$T%after the birth of my second child and I had lost the birth weight, the fat on rt. side of face disappeared also, I am 5-4 and weight 98 lbs after the birth of my sons I weight maybe 95 lbs.T&not that I know ofT'~ T(?T)T* SuccessfulT+T,T-T.T/T0T1T2T3T4I do think that at 19 when I had all my wisdom teeth taken out by inpatient surgery I did notice a change in the rt. side of face.T5 SuccessfulT6ZT7?@??@@??DTETFTGTHTITJTKModerateTL5@5@MTN~ TO?UU~ U0@UUUU{Sometimes my hands and feet get very cold. At night I have to sleep with socks so my feet don't get cold and become purple.U Silvia MolerUHispanicU Microbiologist U OU NegativeU U UUUUUUUUUUUUUUFU=Excesive swetting from my armpits. Back problems (scoliosis).UUUU U!U"U#U$ U%'~ U(@U)U*Somewhat SuccessfulU+U,U-U.U/U0 UnsuccessfulU1U2U3SU4JAlloderm in 1999. It helped a lot and the procedure was not to complicatedU5 SuccessfulU6ZU7@@@????????DUEUFUGUHUIUJUKModerateUL5@5@M UNOVV~ V1@VVVVI have the scleroderma from Rombergs on the left side of my face. I have been diagnosed with colitus, depression,and possibly thyroid trouble when Iwas very youngV Tom SabelVWhiteV  Social worker V OV PositiveV V VVVVVVVVVVVVVVI use to have the spaams where the area under my jaw on the affected side of my face would get knotted up and I had trouble opening my mouth. This problem has disappeared since I began to take Celexa and Buspar.VVV38-39 I think.VV V!V"V#V$ V%'~ V(@V)V*V+V,V-V.V/V0V1V2V3 V46ZV7@??@?@??@???DVEVFVGVHVIVJVKModerateVL5,@5@M VNOWW~ W2@WWWWWSusan L. SpieseWgerman/english descentW rural letter carrier W OW PositiveW W WWWWWWWWWWWWWWCan't remember what the doctor called it but the joint is not right on the romberg's side of my face. It gets sore sometimes & I cannot fully open my mouth without painsWjfibro-cystic breast condition had 1/2 my thyroid removed due to tumor...needle biopsy showed hurthle cellsWW late 20'sWW W!W"W#W$ W%'~ W(W)W*W+W,W-W.W/W0W1W2W3 W46ZW7@????????@DWEWFWGWHWIWJ WKMildWL5?5M WNOXX~ X3@XXXXXJane Valerie SandallQXHBritish (Irish/Scottish) caucasian (is that the correct spelling !!!???)X Computer SystemsX X NegativeX X XXXXXXXXXXXXXXX{miscarriages and premature birth of baby at 26 weeks which died after 9 days. i have not been successful at having childrenXX pre-teensXX X!X"X#X$ X%'~ X(X)X*X+X, UnsuccessfulX-X.X/X0X1X2X3X4After a series of silicone injections over months, I had to have 1 operation to try to drain out silicone that was previously injected but did not stay in the Rombergs areas of face. It moved to areas which had softer tissue. the Rombergs areas had tougheX5 UnsuccessfulX6ZX7DXEXFXGXHXIXJXKModerateXL5&@5@M XNOYY~ Y@Y@YYYYY Julie BackeYYP1/4 Scottish & 1/4 Swedish - the rest is a Heinz 57 mix of welsh/german and moreY Corporate ParalegalY Y NegativeY Y YYYYYYYYYYYYYY`YWHave deveoped allergies in recent years. Sinus infections on left side. Bowel problems.YYYY Y!Y"Y#Y$ Y%'~ Y(?Y)Y*Y+Y,Y-Y.Y/Y0Y1Y2Y3 Y46ZY7??@?@???@?@DYEYFYGYHYIYJYKModerateYL55M YNOZZ~ ZZ@ZZZZZPam Kerr (for Nikki)ZWhite Z  Z Z ZZZZZZZZZZZZZ ZZZZZ Z! Z"9Z#Z$ Z%'~ Z(Z)Z*Z+Z,Z-Z.Z/Z0Z1Z2Z3 Z46ZZ7DZEZFZGZHZIZJZK Very MildZL5&@5?M ZNO[[~ [[@[[[[([Annette Marie (Halladay) Morris<[3French, Irish, Belguim, French Candain and American2[ )Sales Clerk and Full time college Student [ A[ Positive[ [ [[[[[[[[[[[[[0['The doctors have diagniosed me with TMJ[[[ not sure,[[ [!["[#[$ [%'~ [(?[)[* Unsuccessful[+[,[-[.[/[0[1[2[3[4vthey put in plates, to build up the bone, one across the cheek (under the eye) and one across the jaw and on the chin.[5Somewhat Successful[6The lipo, that was inserted into the cheek to puff it out, didnt take in the frist surgery and became infected and drain out it after the second.Z[7?@@@??@D[E[F[G[H[I[J[KModerate[L5(@5(@M [NO\\~ \@[@\\\\\ Teresa BurksN\EI have Scottish, English, German, Irish and Cherokee Indian ancestry.\ Insurance adjuster \ O\ Positive\ \ \\\\\\\\\\\\\ \\\\G\ >I have alot of surgery, so I can't tell if it has slowed down.\!\"\#\$ \%'~ \(@\)\*Somewhat Successful\+\,\-\.Somewhat Successful\/\0\1\2\3 \45#\6It was an awful experienceZ\7@@@@@@@?@@?D\E\F\G\H\I\J\K Very Severe\L5@5@M \NO]]~ ][@]]]]]Les Bienkiewicz]Polish5] ,ex Army officer (22 yrs); now public servant ] A] Positive] ] ]]]]]]]]]]]]]]]High blood pressure.]]mid 20s]] ]!]"]#]$ ]%'~ ](1@])]* Successful]+],Somewhat Successful]-]. Successful]/]0]1]2]3]4]5Somewhat Successful]6Z]7???????D]E]F]G]H]I]J]KSevere]L5@5@M ]NO^^~ ^[@^^^8^/only when iget very cold legs, hands get purple^Sean William Price^white north american^ denta lab technician ^  ^ ^ ^^^^^^^^^^^^^G^>sometimes if i am chewing gum it locks up and also feel spasms^^^^^ ^!1^"(no,most damage was done in earlier years^#^$ ^%'~ ^(@^)^*^+^,^-^.^/^0^1^2^3 ^45^^6Ui am thinking of micro-surgery, i have saw many people do very well with this surgeryZ^7@?????????D^E^F^G^H^I^J^KModerate^L5@5M^N~ ^O?__~ _\@___T_KNo color change, but I am often cold in my extremities, feet hands and nose_yvonne demarino'_french/italian/american indian_ plant pathologist _ O_ Positive_ _ _______________As a preteen I experienced a time (weeks) when I had joint pains and woke up sore. I went to a doctor at that time, but no diagnosis was made. If I get sick (which is infrequent) it seems to settle in my chest. I used to smoke and had bronchitis. I was to___[_ RIt is so difficult to tell, I was undiagnosed for so many years I just ignored it._!_"In my 30's. I don't know if it speeded up or it was because I married a man 6'4" and he told me it was worsening as he was always looking down at my head_#_$_%How can I know, but I do believe it's hormonally related. I feel it is increasing now and that hormonally I feel like I am having my last "hurrah" before menopause.&_&None of this is quantitative._'~ _(_)_*_+_,_-_._/_0_1_2_3_4My "coup de sabre" is only on my head and is covered by my hair. It has just reached my forehead in one spot and I would consider surgery if it crossed my face. _56Z_7?@??D_E_F_G_H_I_J_K Very Mild_L5.@5$@M _NODģl2C5;1iag ?89t`PT0aPbPcPdPePfPgPhPiP$jPkP$lP$mPnP$oPpP$qPrPsPtPGuPvPwPxPwyPzP{PG|P}PG~PP``~ `@\@`````Karen Hamilton` Caucasian` Registered Nurse ` B` Positive` ` ``````````````My jaw does not open very far and if made to at the denist office then it is very painful and the pain will last for days. Chewing gum also can hurt my jaw`I think I listed everything on the last page because I do not know what is relevant and what is not. I just wanted to say for the last question on rating my face. I rated it severebecause of what I looked like as a child. The surgeries have helped some an```` Stopping the pain seems to help it some but I cannot really say that it has stopped or slowed down because the degeneration has been ocurring my whole life, even after the reconstructive surgery my face has always been doing this.`!-`"$as a toddler and around 29 years old`#`$`%Yes pain seems to make it speed up. I was told as a child that I probably could not have children and so far I have never gotten pregnant.`&All I can think of is that when I was younger I did smoke some pot and I tried cocaine and it seemed to make it worse. I am embarrassed to admit this but I figure you should know all. But yet I do have to say that smoking the pot did help with the pain, b`'~ `(?`)`*Somewhat Successful`+`,`-`.`/`0`1`2`3`4I had an inguinal hernia as a child but I do not think that was relevant to this. I did refuse the silicone injections as a child. I am glad now because of the ramifications it has had on others. I was also offered the bone graft but turned that down. I l`5`6I do not have health insurance right now and have not for years and the cost of the care I have received has been tremedous. I have been unable to work for several years due to the pain and yet so far I have not really found any doctor that has been of anZ`7@@@?@?@@@?@@?D`E`F`G`H`I`J`KSevere`L5@5?M`N~ `O?aa~ a\@aaaaaKathleen Clift'aMother- French / Father-German6a -Owner/Vice President - Transportation Company a Aa Negativea a aaaaaaaaaaaaaaMy jaw has locked peiodically since I was about 10 years old. I still can not open my mouth wide enough to eat apples or a hamburger. I had braces on my teeth from the time I was 12 until I was 14. This seemed to escalate the jaw problem. Several times mya}Xrays showed that part of the bone on the right side of my chin was missing when I was 16 years old. I have Stenosis - L4 L5.aaaa a!a" 18 years olda#a$ua%lStress seemed to make it speed up. I had 5 stressful pregnancies and started my own business. Lots of stress a&'~ a(@a)a*Somewhat Successfula+a, Unsuccessfula-a.a/a0a1a2a3a4a5 Successfula6The silicone injections changed and damaged some of my features and the operations made me look better. The fat from the injections dissolved within 6 months. I am very lucky. Makeup covers up most of my faults. My PRS seems to be very mild compared to otZa7???@DaEaFaGaHaIaJ aKMildaL5@5?MaN~ aO?bb~ b\@bbbbb Nickie Snowb Caucasionb TV News producer b  b b bbbbbbbbbbbbbbAfter my first reconstructive surgery my jaw started to crack when I opened it too wide but is it better now. I only get lock jaw during times of stress.bI have patches of numbness all over my body--predominantly on the right side but a few little spots on the left side. I have one large chunck of numbness on my upper right thigh. In the areas of numbness, no body hair grows.b.b%I believed it stopped around 23 or 24bb b!5b",it rapidly sped up 18-22yrs and then stoppedb#b$b%I can't be sure, but I partied a lot in college and that's when the atrophy really began to become pronounced. I lost about 30 lbs and drank college levels (that's a lot) of alcohol. Some how I think that the alcohol and lack of sleep contributed to poor b&'~ b(@b)b*Somewhat Successfulb+b,b-b.Somewhat Successfulb/b0Somewhat Successfulb1b2b3 b46Zb7@@????DbEbFbGbHbIbJbKModeratebL5"@5@MbN~ bO?cc~ c]@ccc'cin the winter only, cold handsc Liz Taylor,c#swedish, scottish, egyptian, french?c 6research coordinator, dietitian, exercise physiologist c Ac Negativec c cccccccccccccLcCused to spasm and stay locked, would have to wait and then pry openccccc c!c"c#c$c%Cc&:i don't think it ever stopped with me, just keeps going onc'~ c(@c)c*Somewhat Successfulc+c,c-c.c/c0c1c2c3 c45bc6Yinitially the fat graft worked well but since the disease continued it ate up all the fatZc7?@@?????@DcEcFcGcHcIcJcKSeverecL5@5M cNOdd~ d@]@dddddL. Kellyd Irish/ Germand student d Od Positived d ddddddddddddd ddd 6-7 years olddd d!d"d#d$d%The Romberg's stopped or seemed to stop for about 5 years. But we are not sure beacause it is a very mild case and very slow moving. just before it restarted my daughter hit her chin a couple times by falling. She is a dancer. d&'~ d(?d)d*d+d,d-d.d/d0d1d2d3 d46Zd7??DdEdFdGdHdIdJdK Very MilddL5&@5@MdN~ dO?ee~ e]@eeeeeDenise H.W. Eisenberge!e student w/ part time job e Ae Positivee e eeeeeeeeeeeeeeeAt one poit, i had been really stressed and uptight while in a fight with a family member and my right arm began to shake or spasm. It didnt last long. We went to a neurologist and he said in extreme cases that can happen to any one. But in any case we wee e16ee e!e"e#e$ e%'~ e(e)e*Somewhat Successfule+e,e-e.e/e0e1e2e3e4in the same surgery as the fat graph i had an implant put in. my mother and i arent sure exactly what it is called but it is artificail and the name of it has 3 letters and it starts with an "H".e5 Successfule6today is January 15, you recently called me to finish this half of the survey. i had my 1st and only (so far) surgery on Oct24 or 25. i had a fat graph from my abdomen to my middle cheek and the implant implanted inmy upper cheek to replace my cheek bone.Ze7@??@????@?@DeEeFeGeHeIeJeKModerateeL5@5M eNOff~ f^@fff.f%My hands get blotchy when there cold.fAmanda Bolingerfwhite#f certifed nursing assistant f Af f f fffffffffffff ff f11ff f!f"f#f$ f%'~ f(?f)f*f+f,f-f.f/f0 Successfulf1f2f32f4)I've had a silicone implant under my eye.f5 Unsuccessfulf6Zf7??@???DfEfFfGfHfIfJfKSeverefL5?5@M fNOgg~ g@^@gggg2g)Kiara Higgins Mother Colleen doing surveygaustralia and english g  g g gggggggggggggggCoeliac diseaseg g4gpg gTreatment seems to have halted most of kiaras atrophy but as she is growing it is hard to tell how muchg!g"g#g$ g%'~ g(@g)g*g+g,g-g.g/g0g1g2g3 g46Zg7???DgEgFgGgHgIgJgKSeveregL5@5?MgN~ gO?hh~ h^@hhh!hHands and feet very coldhSylvia Hajdukovich Slovenianh  housewife h Oh Positiveh h hhhhhhhhhhhhh3h*Cant open wide extrodinary pain in the jaw*h!Right breast as mentioned earlierh h30hh Electronic treatmentsh!h"h#h$h%second pregnancy h&'~ h(?h)h* Successfulh+h,h-h.h/h0h1h2h3h4 tissue grafth5 Successfulh6Zh7?@???DhEhFhGhHhIhJhK Very SeverehL5(@5@M hNOii~ i^@iiiQiHMy hands (and usually my feet) are always cold, even when it's warm out.i Kristi Davisifrenchi administrative i Oi i i iiiiiiiiiiiiiiI get pain in my jaw.iiiii i!i"26-27?i#i$i%I answered no to most of the questions above, but I'm not sure if it has slowed down or actually stopped. Since it hit so quickly and deteriorated so fast, I'm not sure that it has stopped altogether. i&'~ i(@i)i*i+i,i-i.i/i0i1i2i3i4I had a new type of implant put in. I'm afraid I don't remember the name of it right now. My doctor had a CT done of my skull, then created implants that he thought would fill the "holes" best.i5 Unsuccessfuli6Zi7@?@?@?????@???DiEiFiGiHiIiJiKSevereiL5&@5@M iNOjj~ j_@jjjjj Deepa Jacobj christianj Teacher j Oj Positivej j jjjjjjjjjjjjjj2j)urinery infections and menstral disordersjjjj j!j"j#j$ j%'~ j(@j)j*j+j,j-j.j/j0j1j2j3 j46Zj7@@@?@@@??DjEjFjGjHjIjJjKModeratejL50@5?MjN~ jO?kk~ k@_@kkkkkVictoria NorrellkWhitek Helpline worker k  k k kkkkkkkkkkkkkokfWhen I get stressed or tired I find I am unable to fully close my jaw. It hasn't happened for 6 monthsvkmI have (although now much improved) - suffered with a very low /weak immune system and always used to be illkkkk k!k"k#k$ k%'~ k(k)k* Unsuccessfulk+k,k-k.Somewhat Successfulk/k0k1k2k3Gk4>Plastic graft to forehead to even out depression on right sidek5Somewhat Successfulk6Zk7?@@??@@@DkEkFkGkHkIkJkKModerate kL5 kM5 kNOll~ l_@lll{lrI have one very small, quarter size, patch of skin without pigment on my right elbow, but I have always had thatn.l Janet TaylorlWhitel Contract Specialist l Al Positivel l lllllllllllll/l&Once or twice I have had my jaws lock.ll l35ll l!l"l#l$ l%'~ l(@l)l*Somewhat Successfull+l,l-l.l/l0l1l2l3l4strabismus suergeryl5Somewhat Successful<l63my eye looks better, but I still have double vision"l7DlElFlGlHlIlJ lKMildlL5@5@M lNOmm~ m_@mmmmmBonnie F. Keenum;m2White American with some Cherokee Indian ancestors/m &Adm. Manager in Construction - Retired m  m m mmmmmmmmmmmmmmI have had surgery for the right jaw as a result of the left jaw being out of line. The left jaw has been a problem from the beginning and reconstructive surgery did completely align the two jaws.mAs stated earleir I have been living with intestinal problems for many years and no diagnose solves the problem. I have taken medication for both stomach and intestinal problems with no results. Tests so far have not given any answers. During the years ofm%mHas never completely stoppedmm m!m"m#m$ m%'~ m(@m)m*Somewhat Successfulm+m,m-m.m/m0m1m2m3 m46Zm7????????DmEmFmGmHmImJmK Very Severe mL5 mM5 mNOnn~ n`@nnnnn Jacob McGowan.n%Caucasion - American - Father Englishn Not applicable - child n  n n nnnnnnnnnnnnn nnnnn n! n"6n#n$ n%'~ n(4@n)n*n+n,n-n.n/n0n1n2n3(n4DnEnFnGnHnInJ nKMildnL5@5@M nNOoo~ o `@ooooono name pleaseo+o "program director of alzheimer unit o Ao Positiveo o oooooooooooooo/o&obesity, cellulitis, infections, ezemaooin my thirties.oo o!o" late thirtieso#o$ro%ialthough I thought it was in remission and started again after a trauma tothe head as i mentioned before.o&vI can't be sure, but when i was on a diet drug with phentermine I thought that it had speed up the deterioration also.o'~ o(o)o*o+o,o-o.o/o0o1o2o3 o46Zo7???????DoEoFoGoHoIoJoKSevereoL5,@5&@M oNOpp~ p@`@pppUpLHANDS ALWAYS FEEL COLD I AM NOT SURE OF BLOOD GROUP I THINK IT IS B POSITIVE'pTina Frances Michelle Patersonp MIXED RACEp NURSERY HELPER p  p p ppppppppppppppnpePALPITATIONS, IRREGULAR HEARTBEAT, DEPPRESSION, CATTERACT, MIGRANE, BACK PROBLEMS ON RIGHT HAND SIDE,pp 14 -15YRSpp p!p" 4YRS TO 10YRSp#p$ p%'~ p(p)p*p+p,p-p.p/p0p1p2p3p4TISSUE EXPANDER TO EXPAND HEAD TISSUE ON BALD PATCH TO ALLOW TISSUE TO BE TIGHTENED MAKING BALD PATCH LESS NOTICEABLE. OPERATION FOR TISSUE TO BE INPLANTED UNDER BROW ON FOREHEAD FAILED CAUSING INFECTION, OPERATION PERFOMED TO REMOVE INPLANTED TISSUEp5 Unsuccessfulap6XI HAVE LOOKED AT THE PICTURES BELOW, PICTURE 1 AND PICTURE 2 IS MYSELF AT A YOUNGER AGE.Zp7@?@?@?@@@@@@@DpEpFpGpHpIpJpKSeverepL5(@5&@M pNOqq~ q``@qqqqqSherree Wakefieldqwhiteq house wife/mother q Aq Positiveq q qqqqqqqqqqqqqCq:not exactly lock jaw, put yes i can't fully open my mouth.qI just found out that i have an iregalure heart beat. And i have endometriosis that justgot trated for. i am currently seeing a maxiofacial sugeon and a plastic sugeon. And i am about to be seeing a ganetics doctore.q q20qq q!q"q#q$q%My daughters birth at age 20 was very trama tizzing i had to have an emergeciy cesection, this past year i had another sugery at i noticed again more deteriationq&I was put on depo lupron shots for my endometriosis this year after my sugery. this stuff also got me to have fluttering heart problems. the reason wy i had to have an emergency cesection when i had my daughter was because a nurse gave me someone elses meq'~ q(@q)q*q+q,q-q.q/q0q1q2q3 q46Zq7@?@?@?@@?@@@??DqEqFqGqHqIqJqKModerateqL5&@5@M qNOrr~ r`@rrrrr Nestor Chavezrlatinr stufdent r  r r rrrrrrrrrrrrr rr r9rr r!r"r#r$ r%'~ r(r)r*r+r,r-r.r/r0r1r2r3 r46Zr7?@@@@??@?DrErFrGrHrIrJrK Very SevererL5@5@MrN~ rO?ss~ s`@sssssSamantha Beth Bishop1s(English Canadian - Irish/Scotish/Englishs Lab Assisstant s Os Positives s sssssssssssss sssss s!s"s#s$ s%'~ s(s)s*s+s,s-s.s/s0s1s2s3!s4Rhionoplasty (spelling?)s5Somewhat Successfuls6Zs7@????????DsEsFsGsHsIsJ sKMildsL5@5M sNOtt~ t`@ttttt Robin NelsontWhitet  Homemaker t At t t ttttttttttttt ttt around 36tt t! t"20t#t$t%t&Okay I have always had a thin face but not to the point where it took everyone's attention when I went out in public but when I got pregnant it started thinning more instead of gaining weight in my face I lost it dramatically and from there it gradually bt'~ t(?t)t*t+t,t-t.t/t0t1t2t3 t45t6I have had no surgical procedures. I am consulting with my third doctor(cosmetic surgeon) on Monday, fat injections have been recommended at this stage.Zt7@@@?@@@?DtEtFtGtHtItJtKSeveretL5&@5@M tNOuu~ u`@uuuuu Marijke ZoonuDutch;u 2PA - personal assistant to SVP Finance at KPNQwest u Ou Positiveu u uuuuuuuuuuuuuuNot really the jaw itself but the muscle connecting the jaws - sometimes when I jawn the muscle is "stuck" and hurts like the stretch is out of it. Then after 1 minute or so, the tension is of the jaw muscle. It only happens when I jawn.uu u2001uu I started to have the illness in a period of tremendous stress in my life, when I lost a lot of weight because of not eating or eating not healthy. Since 2 years my life is back to normal as well as my eating habits (spline function and kitney working prou!u"u#u$ u%'~ u(?u)u* Successfulu+u,u-u.u/u0u1u2u3 u45u6I had 2 fat injections - the result was good in the beginning but after 6 months the fat disappeared again. After the second operation a little fat stayed from the 1st operation but again 6 months after the 2nd operation it was back to before. Since 2 monZu7??DuEuFuGuHuIuJ uKMilduL5@5@M uNOvv~ va@vvvvvShandra HubbardvAFRICAN-AMERICANv REGISTERED NURSE v Av Positivev v vvvvvvvvvvvvvvI'VE GONE TO DENTISTS OVER THE YEARS TO HELP WITH THE SEVERE PAIN THAT WOULD SEEM TO BE DENTAL PAIN. IT BEGAN IN MY EARLY 20'S AT THE SAME TIME THAT I NOTICED THE DIMPLE IN MY CHEEK. MY PAIN WAS SO GREAT THAT I BLACKED OUT AND CAME TO ABOUT 5-7 MINUTES LAvWHEN I AM SICK(FLU,FEVER,SORE THROAT,ETC.) I FAINT. BEEN HAVING UNEXPLAINED BLACKOUTS SINCE I WAS A TEENAGER, 13 OR SO. I HAVE BLACKED OUT EVEN WHEN I WASN'T SICK. SOME DOC'S IN THE PAST HAVE SAID THAT I AM BORDERLINE "ANEMIC" BUT NOT ENOUGH TO CAUSE ME Tv v28vv v! v"26v#v$ v%'~ v(@v)v*Somewhat Successfulv+v,v-v.v/v0v1v2v3 v45v6AFTER 3 INTERVIEWS WITH 3 PLASTIC SURG. ONLY 1 SUGGESTED A FAT TRANSPLANT. I HAD IT DONE LAST DECEMBER. I REABSORBED A LOT OF MY FAT. MADE ME VERY SAD BUT MY FACE LOOKS BETTER THAN IT DID. NO ONE EVER MENTIONED ROMBERGS DISORDER. FOUND IT BY ACCIDENT. VERZv7??????@DvEvFvGvHvIvJvKModeratevL5@5M vNOww~ w@a@wwwww Vicki Noblew Australianw  OHS Manager w Bw w w wwwwwwwwwwwwwwOver the years I do not seem to be able to open my mouth as wide as I used to. For example, I can only take small bites of fruit and cannot eat anything cold.wwwww I think the changes to my lifestyle, diet, less stress have assisted in my well being and I do not suffer from headaches as much. However the tissue wasting is still happening, but has slowed over the last 15 years and is now very slight deteriorationw!w"w#w$ w%'~ w(@w)w* Unsuccessfulw+w,w-w.Somewhat Successfulw/w0w1w2w3w4w5Somewhat Successfulw6Zw7?????DwEwFwGwHwIwJwKModeratewL5@5@MwN~ wO?xx~ x`a@xxxHx?My pains come from my right cheek and my forehead when its coldxHeidi Del-TorchioxFrenchx Mother x Ax positivex x xxxxxxxxxxxxx xxxxx x!x"x#x$x%When I'm tiredHx&?Since I was pregnant the seizures happen less often than beforex'~ x(@x)x*x+x,x-x.x/x0x1x2x3 x46Zx7???@@DxExFxGxHxIxJxKSevere xL5 xM5xN~ xO?yy~ yb@yyyyyBryan McDowelly Caucasiony student y  y y yyyyyyyyyyyyy yyyyy y! y"17y#y$by%YSeems like it progressed into my skull from around age 17 to 19 and my chin at same time. y&'~ y(y)y*y+y,y-y.y/y0y1y2y3 y46Zy7@?@@?@??@??DyEyFyGyHyIyJyKSevereyL5 @5?M yNOzz~ za@zzzzzKelly Silliman$zIrish, Itallion and English.z %The best job in the world...A Mom! :) z Az Positivez z zzzzzzzzzzzzzzOzFEpstein Barr Virus, IBS, Female problems(as I explained in first part)zyzpI Can't answer this acuratly because it started again quite recently, but had slowed down for like a year or so.zz z!sz"jIt started when Iwas planning my wedding 1995 but dfinitly speeded up when I became pregnant early in 1996z#z$Nz%EDefinitly pregnancy...first three months and then after delivery too. z&'~ z(?z)z*z+z,z-z.Somewhat Successfulz/z0z1z2z3 z45z6My first reconstructive free flap took 11 hours and was a total failure. I swelled up so much that some skin actually died on my cheek. I actually had a whole there for some time before the stiched it up and now have a scar going across my cheek. My secon"z7DzEzFzGzHzIzJzKModeratezL5&@5@M zNO{{~ {a@{{{{{ Heidi Febles{ Spanish/Cuban{ Senior Manager/IT { O{ { { {{{{{{{{{{{{{Z{QMy jaw locks up periodically. Its like the muscle is having a spasm and it locks.,{#I have had ovarian cysts and Polyps{{{{ I had several surgeries. I had tissue removed from my belly and inserted into the face. It didn't seem to work so they removed tissue from my butt and inserted into my face. I think it has slowed down but now i feel like it is affecting my eyes.{!{"{#{$ {%'~ {(@{){* Unsuccessful{+{,{-{.{/{0{1{2{3I{4@A large piece of dermis from my butt and inserted into my face .{5Somewhat Successful{6Z{7@???????D{E{F{G{H{I{J{KModerate{L5*@5@M {NO||~ |a@||||| Amy Bennett|White American| Computer Professional | B| Positive| | ||||||||||||| ||||| |! |"31|#|$ |%'~ |(@|)|*|+|,|-|.|/|0|1|2|3|4 Brain biopsy|5Somewhat Successful|6Z|7@????@??@@?D|E|F|G|H|I|J|KModerate|L5$@5@M|N~ |O?}}~ } b@}}}}They are permanently numb and feel constantly cold & tingling.. when in hot water or cold temps this effect increases and they turn bluish-purple. }Sara} CAUCASIAN}  self-employed } O} } } }}}}}}}}}}}}} }} }21}} }!}"}#}$ }%'~ }(?})}*}+},}-}.}/}0}1}2}3 }46Z}7@@@?@@????D}E}F}G}H}I}J }KMild}L5@5@M }NO~~~ ~`b@~~~~~ Jocelyn Clark~ Australian~ Social Work Student ~  ~ ~ ~~~~~~~~~~~~~ ~~~~ ~ It has never progressed~!~"~#~$~%!~&Mine is not progressive.~'~ ~(?~)~* Successful~+~,~-~.~/~0~1~2~3~4|The operations were wonderful when I had them done. As I get older the implants and tissue graft are obvious as I get older. ~56Z~7@?@???@@@?D~E~F~G~H~I~J~KModerate~L5,@5@M ~NO~ b@Lauren Couchoud Caucasian  home maker  B Positive    !"16-21#$%i noticed the most change after I got married at 16 and had my daughter also at 16 I had another daughter at 18 and a son at 21. the changes have been very gradual, but it is durring these last few years I've noticed the largest change. &'~ (@)*+,-./01234biopsy of my right eye lid at age 3 to determine why my lashes fell out- scar tissue was found. but cause for loss was not determined. at age 12 I had reconstructive surgery of the lid to close the gap. (the center lashes fell out- or 1/3 total lashes) th5 Unsuccessful6Z7@?@???@?DEFGHIJ KMildL5(@5@M NOD0l eqHzX2?WN N-PT0PPPPPPPPP$PP$P$PP$PP$PPPPGPPPPwPPPGPPGPP~ b@ Alisa Sisk caucasion teacher O   NEIt was thought to be an inflammation of the TMJ and it does re-occur.K BIt has progressed across my scalp and just above the left eyebrow.!"#$ %'~ (5)*+,-./0123 46Z7@?@@??@@???DEFGHIJ KMildL5*@5(@M NO~ b@I've been diagnosed with a mild case of Raynaud's. My hands, feet and nose are always cold and become purple and numb in cold weather. Recently, after exercising in the cold rain, my right index finger and like right toe started to ache and I experienced Lauralee Pasko-$white (western european and spanish) information technology    3*Had TMJ as a child. Went away on it's own.[Rdepression, fatigue, panic attacks, general confusion and forgetfulness, headaches2-3 months of onset !"#$%stressU&LI have recently been diagnosed and have not taken any drugs for my symptoms.'~ (5)*+,-./0123 456I've noticed the scleroderma plaques seem to start in places that have scars already - I have a scar on my right cheek, which is the result of having a mole removed as a teenager. I've noticed in the past few months, the scar has doubled in size. AdditionZ7@?@?@?@@?@@@??DEFGHIJKModerateL5"@5@M NO~ c@neWhen the weather is very cold, the fingers on her left hand go white and her hands feels all tinglelyAnnabelle Wood Student      ! "6#$ %'~ (5)*+,-./0123 46Z7@??@????@??DEFGHIJK Very SevereL5@5&@MN~ O?~  c@ Sandra Lehman caucasion Registered Nurse O Positive  6-abnormal CBC diagnosed as bone marrow problem !"#$:%1it has been steadily progressive since it started &'~ (5)*+,-./0123 46Z7@@?@???@?@??DEFGHIJKModerateL5&@5@M NO~ @c@ Gokhan CeylanWhite  Technician A   ,#Change in structure and appearance. !"#$ %' (54)*+,-./0123 46Z7@?@?@?@@?@DEFGHIJK Very SevereL5"@5@MN~ O?~ `c@aXThe color of my hands range from very red to almost purple when exposed to cold weather.Henrik Thrling kaukasian student    Have an area, a oval spot (about the size of a small matchbox) under my left breast. I got it when I was about thirteen and got it diagnosed. It was a fairly rare type of skin disease that was said to have most likely been caused by an insect. But since I 17 !"13-16#$ %' (52)*Somewhat Successful+,-./0123 4561st operation: Expander placed under skin over the 'coup' to stretch skin. This for... 2nd operation: An so-called "acrylat" (sort of plastic) were fitted to the bone to cover the 'coup' (left forehead, left side of skull (top of head)). 3rd operation: FaZ7????@????@@@DEFGHIJKModerateL5 @5@M NO~ c@ My hands are often cold Amlie LozeauNorth American, white occupational therapist    bYMy jaws were not closing properly: One of my jaw was 'oblique' and the other 'horizontal'I saw a dermatologist recently because I noticed that I lost hair near to my forehead on my involved side: I am taking now Rogaine 5% to try to control this loss 16 When I had a surgical reconstruction of the forehead with silicone, the atrophy at this level stopped but not at the level of the angle of my jaw and the cheek.!"#$ %' (55)*+,-./012341)Acrylic (that's the substance the surgeon told me- I was 16) fixed on my skrull and shaped to fulfill the loss 2)Realignment of the 2 jaws by provocative fracture5 Successful6I am waiting for a 3rd one who consists of a soft tissue layer taken on my back to be fixed directly on the inferior jaw to increase the angle of the jaw. To increase the size of my cheek, my surgeon advise me to have fatty material injectionsZ7@??@@?@DEFGHIJKSevereL5@5@MN~ O?~ c@$It just started a week ago.Maria BattagliaWhite Studnet      !"#$ %'~ (5)* Successful+,-./0123 46Z7@??@???@DEFGHIJKModerateL5@5M NO~ c@C. MoodyWhite Student    first symptom was vitiligo around mouth and nose- He was 4 years old and I took him to an dermatalogist and was told to not do anything but watch it. 12-14 months later, I started noticing the atrophy of the face on that side. At times his face looks like !"#$ %' (51)*+,-./0123 46Z7???DEFGHIJKModerateL5@5$@M NO~ c@Brian     !"#$ %'~ (5)*+,-./0123(4DEFGHIJKL5(@5@M NO~ d@Amy Michelle Becker caucasian Pediatric Resident O Pos  ZQMy jaw often "pops" and is painful, but I have full range of motion of the joint.!I have pernicious anemia !"#$ %'~ (5)*+,-./0123?46Plastic surgery on my scalp to remove the bald places.5 Unsuccessful6Z7@???@?@@??DEFGHIJK Very MildL5.@5@M NO~  d@Catherine Parramore white - u. k primary school teacher A Positive   &during each of 4 pregnancies.% slows down during pregnancy.!" After birth#$Q%Hgiving birth and periods of stress are sometimes followed by a flare up. &'~ (5)*+,-./0123 46Z7@?@@???@???DEFGHIJKModerateL5$@5@MN~ O?~ @d@VMat times my hands have stayed cold and achey and get a blueish tent to them .Deborah D. Fambry3*american with german/indian /irish(decent) medical assistant B Positive  most all DX:have passed with time . except the vetiligo and the joint pain and swelling also my son has a patch of silver that appeared on the rt side of his head about the size of a half doller when he was 12 after a seizuer. !"#$ %' (51)*+,-./0123 46Z7@@@@@?@??DEFGHIJKL5@5@M NO~ `d@Monica M. Seiberling caucasian occupational therapist     n eI wish I knew. My docs thought that the meds I was on may have helped (Aspirin, Tegretol, Propranolol!"#$ %'~ (5)*+,-./0123 456My physicians advised that I avoid surgery- not sure what "speeds up" the atrophy. Injury to the face was one theory and so they said try not to have any surgeryZ7@@@@??@DEFGHIJ KMildL5 @5@M NO~ d@Basically, when my hands get cold, the ends of my fingers get numb and whitish. It doesn't necessarily have to be cold out. It can sometimes happen when I am holding a cold drink or if I am in very cold air conditioning. Ellen Foley Caucasian# mother, landscape designer O     37 !"#$ %'~ (5)*Somewhat Successful+,-./0123 46Z7??@????????DEFGHIJ KMildL5@5?M NO~ d@C:I ussualy changecherry red colour by just standing outside Shannon Bird     !"#$%& methotresate'~ ()*+,-./0123 46Z7?@?@??DEFGHIJKModerateL5@5MN~ O?~ d@derek tyler albertsonwhite" elementary school student      !"#$ %'~ ()*+,-./0123 46Z7????DEFGHIJKSevereL5"@5@MN~ O?~ d@Jamie Wilkinson Caucasian Real Estate agent O Negative    24 !"#$ %'~ (>@)* Successful+, Unsuccessful-. Successful/0123 46Z7?????DEFGHIJK Very MildL50@5*@M NO~ e@Robert Cunninghamwhite! regional service manager O   h_Right sinus very dry, bleeds easily, I believe because the tissue is very thin due to Rombergs. !"#$%Stress, hot weather &'~ (@)*+, Unsuccessful-./0123 467??@9:;???=>$???@??CDEFGHIJKSevereL5$@5@M NO~  e@-$NO COLOR CHANGE BUT VERY COLD HANDS. SARAH ZITO"ITALIAN, IRISH AND GERMAN$ CERTIFIED PUBLIC ACCOUNTANT O Negative  I CHECKED INFLAMMATORY BOWEL DISEASE FOR WHICH YOU ONLY LIST CROHN'S DISEASE AND ULCERATIVE COLITIS. HOWEVER, THERE IS ANOTHER RELATIVELY RARE INFLAMMATORY BOWEL DISEASE, WHICH IS ONLY SEEN ON BIOPSY AND IT IS CALLED COLLAGENOUS COLITIS. THIS IS THE IBD T !"#$ %'~ ()*+,-./0123 46Z7@@@?@@@@@?@@@?DEFGHIJKModerateL5?5?M NO~ @e@michael klihanceafrician american     17 years !"#$ %'~ ()*+,-./0123 467@?9:*;@?@?@AB?@DEFGHIJ KMildL5"@5@M NO~ `e@metin5,turkish but mixed (mothers mother was a jew)  B Positive  ;2but when I chew sometimes makes krick krack soundsdeudenum ulcer I dont know I dont know but it seems it is progressing ONE THING I FORGOT one ear is 6.7cm the other 6.3 penis is also deformed slightly towards leftside so when urinating it makes 15degree angle!"#$%&I remember when I was a child I chewed and bited bateries(still remember the bitter taste)yukk.I wonder how I survived after that.'~ ()*+,-./0123 46Z7????@@????@@?DEFGHIJK Very MildL5@5@M NO~ e@My hands are very sensitive to cold weather, and are painful if I go outside in the winter months without very thick gloves. Without a good set of gloves they turn bluish and hurt as the warmth returns indoors. Gill ChapmanWhite caucasian  Law lecturer B Negative  Mainly symptoms of depression and anxiety. I am described as 'highly strung'. Physically, no major problems now, although as a baby I contracted a severe form of bacterial meningitis and suffered from typhoid fever in the Middle East, some years ago. Apar !"#$ %'~ ()*+,-./0123 46Z7@?@?@?@@?@???DEFGHIJ KMildL5@5@M NO~ e@ Maria Garner     !"#$ %'~ ()*+,-./0123(4DEFGHIJKL5@5@M NO~ e@ Jada CallawayWhite  Computer work O Negative  I grind my teeth badly at night and find myself clenching my teeth/jaw during the day. I wear a night guard so it absorbs some of the grinding. Jaws hurt and at times it is painful to fully open my mouth. 17 !"#$ %'~ (?)* Unsuccessful+,-./01234Dermabrasion to remove the discoloration left from the disease. I really had the surgery too early as the disease had truly not run its course. After the surgery I still experienced a slight degree of discoloration and some loss of fatty tissue to the are5Somewhat Successful6Z7??DEFGHIJK Very MildL50@5@M NO~ e@B9Hands are cold most of the time, even when it's warm out.Adriana Campbell Caucasion Customer Service    .%Constant back, shoulder, & neck pain. 20 ! "16#$B%9Substantial facial damage on left side in a car accident.&Just stopped with age'~ ()*+,-./0123 46Z7??????@??DEFGHIJKSevereL5?5@MN~ O?~ f@I've complained to my General Doctor about cold hands and feet to no avail. No color changes. I sleep in wool socks and sometimes even that doesn't help. Have spoken to a Rheumotologist (spelling) about this and he said "you have Sclerederma. Live with it Linda Brink Caucasian Customer Service    At times I have severe but painless cramps in the left (the affected) side of my face that cause my jaw to lock shut. These cramps are highly visible on the surface and almost humerous to watch. Haven't had this happen for about a year.The area involved with my "disease" becomes sensitive at times. My scalp will itch severly and develop small "bumps" througout the effected area. I have a large irregular dark discoloration on the lower left side of my face and neck. The left side of my fI wasn't diagnosed until my mid 30s. It seems to slow down at times but I don't know why. Maybe menopause has something to do with it. I'm 54 yrs old this April 17. !;"2It "comes and goes". I haven't tracked any pattern#$g%^PS, I have NEVER been pregnant. Perhaps that's a good thing as far as progress of the disease. &'~ ()*+,-./01234It was recommeded by Dr. Jablonski (spelling) from Warsaw Poland (about 20 years ago)that I leave it alone. She also suggested that I not wear pierced earrings and to let the pierced holes in my earlobes heal (did not do that).56I anticipating having an eyebrow tatooed on the left side. I'd appreciate any input you can supply. My concern is that over the course of my disease this area has continued to "receed". If I had done this earlier I would now have an eyebrow that looked liZ7???????DEFGHIJ KMildL5 @5@M NO~  f@ Bo AnderssonNorthern Europe Computer engineer A Positive    !"#$ %'~ (;@)*+,-.Somewhat Successful/0 Successful123`4WMoved a muscle from my foot to left side of lower lip in order to close mouth properly.5 Successful6Z7??@DEFGHIJKModerateL5@5@M NO~ @f@ Evelyn Filla Caucasion# Office assistant/Homemaker    .%Many teeth problems on the left side. !"Child 6-8 years#$ %'~ (?)*+,Somewhat Successful-./0Somewhat Successful123 46B7@@?@?@AB?DEFGHIJKModerateL5,@5$@M NO~ `f@ MY FEET GET REALLY COLD preston nelmsWHITE PLUMBER    7.SOMETIMES I HEAR A CLICKING NOISE AND IT HURTS.%HERNIA OPERATIONS AND AN APPENDECTOMY !" AROUND SIX#$ %'~ (@)*Somewhat Successful+,-./0123 4607@@@?@?@=>*???@???DEFGHIJKSevereL5@5@MN~ O?~ f@ULI was diagnosed with mild depression associated with some personal problems. Carl Drago Caucasian Prosthodontist A Positive  .%class II malocclusion, no dysfunction21 years !"#$ %'~ (@)*+,Somewhat Successful-./0 Successful123 456The facial asymmetry was more evident on photographs than in person. Many people professed not to have noticed the asymmetry in real life and were surprised to see the differences in photographs~ 7?8=~ >??~ @?ADEFGHIJKModerateL5&@5@M NO~ f@ Anonymous     !"#$ %'~ ()*+,-./0123(4DEFGHIJKL5@5@M NODlrH6 oZgeAp3 PT0PPPPPPPPP$PP$P$PP$PP$PPPPGPPPPwPPPGPPGPP~ f@Anselma Jurez NoriegaSlavic      !"#$ %'~ (@)*Somewhat Successful+,-./0123 467???9:$;@?????@~ A? BDEFGHIJK Very MildL5"@5?M NO~ f@michael thomaswhite general contractor O     20's ! "30's#$ %'~ (?)*+,-./0123 46~ 7? 8:;?@??> ?@~ A? BDEFGHIJKModerateL5&@5@M NO~ g@wnMy hands (and feet) are almost always cold. The palms of my hands and fingers look splotchy when they're cold.Jennifer Alcorn very mixed full-time mother A   Lichen sclerosus; persistent phlegm in throat; eye pain w/yellow spot (not yet seen); anxiety; depression; crooked teeth; migraines.wnIf my headaches & eye problem are related then it has not stopped; otherwise I'd say it stopped around age 17. ! "10?#$!%Possibly - sun exposure. &'~ (?)* Unsuccessful+,-./0123 45P6GInsurance ought to cover it - how do people get their insurance to pay?N7@@@?@@@?@?@@BC~ D?EFGHIJK Very SevereL5@5@M NO~  g@ Lynda Renouf'New Zealand european, NZ Maori Chef O Positive  It clicks a lot..%Bronchitis, not chronic, but regular.3 *It seemed to slow down when I was very fit!"22 or 23#$%}&tI went through a stage of serious drinking and smoking marijuana in my teens, it seemed to speed it up a little bit.'~ ()*+,-./0123 46~ 7?8~ 9?:~ ;? <=~ >??@??A BDEFGHIJ KMildL5@5@M NO~ @g@Jared R. Fieldscacasin sales      21 !"#$ %'~ ()*+,-./0123 46$7@?@?@;<0=????@??CDEFGHIJKSevereL5,@5@M NO~ `g@ Adam Smith3*Norweigian 1/8 (the rest a mix of European Network Engineer A Positive  I tend to blame it on sinuses, but, sometimes I can't open my mouth all of the way or close it tight and my jaw bone pops on occasion. ! "28#$i%`don't know if this is real or not, but the only thing that happened that year was I got married. &'~ ()*+,-./0123 46~ 7?8~ 9?:~ ;? <=>???@AB?@CDEFGHIJKModerateL5&@5@M NO~ g@Christine- Raynauds Syndrome, Depression Seths maternal great grandfather- Alkylosing Spondilitis of the spine Seths Brother, Joshua 19yrs- Facial deformity mostly of the lower jaw, it's twisting. Seths 1/2 sister, Tabitha 22yrs- a large nerve area (skin Seth David White caucasion\ S10 yr old, Mom is a nurse, and insurance adjuster, Dad works in Safety and Training A Positive  Teeth don't line up.ADHD takes Ritalin, Started on this about 11/01. Chronic sinus problems. Cannot seem to relax. He sleep walks. We never know where to find him in the mornings. He rides a dirt bike (motorcycle) and plays Hockey. He has little to no fear. He doesn't cry mu !"#$ %'~ ()*+,-./0123 456I would be very interested in the outcome of the above questions. I guess I put the questions on the first part of the survey. Sorry/~ 7@8<~ =@>~ ??@~ A@ BC~ D?EFGHIJKSevereL5@5?M NO~ g@ Tracey Adamswhite  housewife/mum O Negative   about 20 !"#$ %'~ (@)* Unsuccessful+, Unsuccessful-./01234the operation i had initially was fat taken from my back and placed in my cheek by micro surgery,the second had to lifted as it wouldn`t stay up. Ithen had silicone placed in my temple,not successful.The others were done because i persisted as i wasn`t ha5 Unsuccessful67@@8 9:;@@@= >@A??@CDEFGHIJK Very SevereL5$@5@M NO~ g@Nicola LindsayWhite  HR Assistant O neg    12 !"#$ %'~ (?)* Unsuccessful+,-.Somewhat Successful/0123 46Z7??@???????DEFGHIJKModerateL5*@5@MN~ O?~ g@I have terrible circulation in my hands and feet, sometimes they are cold for no reason, my hands, feet and sometimes legs can go purple and blotchy and my veins protrude out. Joanne Harris Australian1 (Aged carer, mother, student, office work      It seemed to slow down a little when I was undertaking some alternative chinese therapies known as 'cupping', but it was very expensive and not that noticeable, although it made my head feel a little clearer.!"#$l%cI think maybe it did get worse when I was pregnant and shortly after, I thought it was just stress.Z&QIt seems to get worse when I am stressed or tired or getting over a bad headache.'~ ()*Somewhat Successful+,-./0123 456I thought the fat injections were excellent, not too painful, no permanent scaring, only day surgery, with a pretty good result (so far).7??8 9:$;??????@A??BC~ D?EFGHIJKModerateL5"@5@M NO~ h@ Rhonda DillWhite Student B Positive    10 !"#$ %'~ (?)*+,-./0123V4MThere is a plastic plate in my forehead and in my jaw held by metal brackets.5 Successful6Z7@?@@??@@@??@DEFGHIJKModerateL5@5M NO~  h@"sara dunne nee rosenfield corcasion0 'full time mum regestered enrolled nurse A Positive  when i was around 17 years myjaw suddenly 'crunched'since then i've suffered from a clicking jaw whichi find makes it difficult to eat foods which requirealot of chewing or biteing.%Bulimia poor body image , facial painaround 12 years !"arund 5-6 years#$ %'~ (?)*Somewhat Successful+,-.Somewhat Successful/0123N4Eadanoids and toncilles removed and grommets fitted when i was 5 years5 Successful6|my surgery for the parry rhombergs was for cosmetic reasons only as my surgon dr ord said the disease had 'burnt' itself out7???9:0;??@???@ABC@?DEFGHIJKModerateL5@5?M NO~ @h@ Axel Wurster   O Positive   Psoriasis ! "31#$ %'~ ()*+,-./0123 46~ 7@8~ 9? :;~ <?=@~ A@ BDEFGHIJ KMildL5@5?M NO~ `h@ John Leuckcaucasion, white student      16 ! "14#$ %'~ ()*+,-./0123 467??@9:$;@?????@A??@?DEFGHIJKModerateL5(@5?M NO~ h@ Corri D Carrwhite customer service O Negative  My jaw will pull itself open and will not let me close it and sometimes it will lock shut and will not open. This happens a lot during my spasms.slowed down 25 ! "24#$N%EMy pregnancy seem to bring the spasms out more. About 4 months along.|&sThe Elavil seemed to help and I was on the klonopin to but I was burising to easyly so they took me off the elavil.'~ (?)*+,-./0123P4Gjaw sergury step cut and pull forward and out to fit with my upper jaw.5 Successful67??@9:~ ;@<=@@??@A@?@CDEFGHIJ KMildL55M NO~ h@SHARON M STONECIPHER CAUCASIAN# MEDICAL BILLING SPECIALIST O Positive  I FAILED TO MENTION IN PART ONE OF THE SURVEY THAT I ALSO AM MISSING THE EYELASHES FROM THE UPPER INNER HALF OF MY LEFT EYE. -I ALSO HAVE DOUBLE VISION WHEN MY EYES ARE NOT DIRECTLY FOCUSING FORWARD BECAUSE THE LEFT AND RIGHT EYE ARE NOT SET SYMETRICALLY 2)EARLY 30'S TO THE BEST OF MY RECOLLECTION$ NOTHING THAT I AM AWARE OF.! "LATE 20'S TO EARLY 30'S#$C%:IT SEEMED TO ME THAT BEING PREGNANT SEEMED TO SPEED IT UP. &'~ ()*+,-./0123 46$7@????;<~ =?>????AB~ C@DEFGHIJ KMildL5"@5@MN~ O?~ h@Georgina Raper     !"#$ %'~ ()*+,-./0123(4DEFGHIJKL5@5@M NO~ h@ Tom Laurich=4Caucasion -- grandparents are Yugolsovian and German Chemical Engineer O     !"#$ %'~ ()*+,-./0123 46~ 7?8~ 9?:~ ;?<DEFGHIJK Very MildL5$@5@M NO~ i@Jennifer Haley School teacher A   PGIf I chew on the right side of my mouth, my jaw will sometimes lock up. !"#$ %'~ ()*+,-./0123 46~ 7@ 89~ : ;=~ >??~ @ADEFGHIJK Very SevereL50@5&@M NO~  i@Tiffany Schmoyer) caucasion/little American Indian college student A Positive  I have a lot of jaw pain. As far as lock jaw, I am not quite sure how to answer that one. My jaw has never locked in the open or closed position, but I do have difficulty opening my mouth wide. I guess you might say its range of motion is slightly limitedNothing that seems relevent. However here are some of the things I have dealt with. I am clumsy. I have had 4 broken arms as a child all due to being active and just getting into trouble. (jumped off a stool, fell off monkey bars, etc.) I have reflux of t16ish?? Unsure Several things happened at this time that might have affected it. First, I started a dietary supplement on the side that might have had something to do with it. All I can remember to tell you is that it is called OPC. I can look up more info if you!A"8off and on throughout the whole process not just one age#$%v&mMy PRS actually stopped and my face rebuilt. I described the events surrounding it previously for question 4.'~ ()*+,-./0123 46~ 7? 8:~ ;?<=???? @B~ C@DEFGHIJKModerateL5 @5?M NO~ @i@My hands get so cold I can't work in the winter right after coming in from the cold (they are so stiff) and it has always been a joke among my friends that in the winter I touch their face and make them jump from the icy fingertips! unless it is midsummer JuneQHEastern European Jewish, with some middle Eastern jewish thrown in (1/4)  Architect O Positive  ofI was diagnosed with TMJ as a child. it still clicks when I open my jaw, and always feels out of jointregarding the questions below, I don't know if it has stopped yet, I was just diagnosed, and it has bee n increasing over the course of the last few years ! "45#$% Maybe stress?8&/I was wondering if physical therapy would help?'~ ()*+,-./0123 46~ 7@8~ 9@ :;~ <? =>~ ?@@~ A@B~ C?DEFGHIJKModerateL5@5@M NO~ `i@Valerie ScannellHispanic / Caucasian Student      !"#$ %'~ ()*+,-./0123 46Z7DEFGHIJKSevereL5&@5 @MN~ O?~ i@Yvonne ButterworthWhite  Nursery Nurse o Pos  0'Dull ache occasionally left side of jaw !"#$ %'~ ()*+,-./012384/removal of morphoea in 1982 (under breast bone)5 Unsuccessful6Z7??@@??@?DEFGHIJKModerateL55?MN~ O?~ i@Ms.Rubin     !"#$ %'~ ()*+,-./0123(4DEFGHIJKModerateL5@5@M NO~ i@ Barb Bittner Caucasian  Marketing B Neg    !"#$ %'~ (&@)* Unsuccessful+,Somewhat Successful-. Unsuccessful/01234The plastic (synthetic cheek bone) is on top of the remaining bone structure on the left side of my face. I am also fairly pleased with the use of alederm in my last surgery. It may turn out like the fat injections and disolve but so far it is looking lik5Somewhat Successful6The free flap transfer of omentum was NOT a good solution/procedure. That first surgery messed me up more emotionally and physically than any of the other treatments I have had.Z7@?@????DEFGHIJKSevereL55MN~ O?~ i@CHRISTINA OCHOAHISPANIC MEDICAL OFFICE MANGER O Pos    ! "23#$%7&.THE DARK SPOTS ON MY FACE BECAME MORE APPARENT'~ ("@)*Somewhat Successful+,-.Somewhat Successful/0123 46Z7@@???@@??DEFGHIJKModerateL5"@5@M NO~ j@melissa graves caucasian nurse A Positive    10 ! "9#$ %'~ (?)*+,-. Unsuccessful/0123 46Z7@?@?@@@@?@@???DEFGHIJK Very SevereL5(@5@M NO~  j@ Kathy Luczak caucasian banker A Positive  @7not exactly lockjaw, but cannot open my mouth very wide8/eye doctor - legally blind in left eye (20/900) !"#$%{speed didn't change, but left eye has sunken deeper into socket in last few years. I take Lortab 7.5mg for eye & head pain. &'~ (@)* Unsuccessful+,-./0123/4&scolatic (?) implant - 1975 - rejected5 Unsuccessful6Z7?@????@DEFGHIJKSevereL5@5?MN~ O?~ @j@Cristina EchemendiaCuban! Administrative Assistant A   This was a main problem at the onset of the disease along with strong pain. I still can fully open my mouth, but I don't get the pains and the "lock jaw" as often as I use to get it when the disease was still developing.zqThe only thing that just came to mind was that I do have a history of arthritis/rheuma on both side of my family. 12 !"#$%It seems like it went from being a white small spot to a hardening and discoloration of the skin fairly quick and then a slow degeneration of the fat tissues. My disease is pretty much stop by now. &'~ (@)* Unsuccessful+,-. Unsuccessful/01234I stopped looking into further surgery since the ones I had were unsuccesful. The last thing I heard that may have worked was a piece of muscle from the leg inserted into the area. It sounded very tedious and of course I couldn't afford the cost. I believ 56Z7???@DEFGHIJKModerateL5@5@MN~ O?~ `j@I grew up in Chicago, Ill. Always had problems with fingers/hands/toes/feet. During winter months always wore leggings to bed because otherwise I had trouble walking upon waking up - knees wouldn't work well. Even have trouble with fingers and feet in Air Beth WilliamsWhite (Jewish) Accounts Payable    Not very often. Occasionally while eating jaw will "pop" and I have to stop eating at that time. And just recently if I am not paying attention, but am concentrating very hard on a task that keeps me still my jaw stiffens up and it takes a little more effLots of back problems. Started with a lifting injury. But the biggest problems seem to be in the SI joints. I can't understand how that came from the injury. Bulging discs yes, but the joint and muscle stiffness is almost worse. Still get dizzy spells now ! "37#$%Maybe stress - the symptom of the progression was an uncontrollable twitching of my left eyelid. Very irritating, and seemed to be the onset of further drooping of the eyelid. &'~ (?)*+,-./0Somewhat Successful1234Right eyelid lift based on a diagnosis of Ptosis from trauma to the head during forceps delivery. When the surgery didn't work, the Opthalmic plastic surgeon attended a seminar where he heard of "En coup de sabre" and that's when he put everything togethe5 Unsuccessful6The last recommendation that anyone gave was for a silicone sling somehow attached to the inside of the eyelid that would keep the eye open and I would have to pull to shut. Didn't sound like an attractive option and repeat surgeries every couple of yearsZ7@?@??@?@@@@DEFGHIJKSevereL5@5M NO~ j@ Bree Pizano caucasian chiropractic technician    After clenching my teeth, chewing on something gummy, yawning, or for nor reason at all, my jaw clenches shut and it takes great effort to re-open and loosen it back up. 14 Possibly; I was told the disease would maybe burn itself out after 4-5 years. Around the time frame the doctors had decided the disease had stopped, I had been taking prednisone and plaquenil for a lengthy period of time. I believe the doctors felt the pr!"#$ %'~ (@)* Successful+,-. Successful/0123 46Z7?DEFGHIJKModerateL5@5M NO~ j@&Ho mani e piedi sempre freddiLada LarovikovaLibera professionista    Iarovikova Lada Given of birth 02/01/1969 Russia Room: Course B. Aires 35. 20124 Milan Italy Telephone Gsm: +39 335 6156650 Email: 3356156650@ tim.it Fax GSM: +39 335 5111941 Translate through Internet!!!!! Object: It suspects syndrome of Parry-Romberg Sy da 3 mesi, #Dieta biologica e voglia di guarire!"#$ %'~ ()* Successful+,-./012345 Successful6Z7?@@@?@DEFGHIJ KMildL5@5?M NOD7llwg\zhskYk3_pxW *PT0PPPP@P@P@P@PP$PP$P$P@P$PP$PPPPGPPPPwPPPGP~ j@Leah LefkovitsWhite    +"I would not no, she is still young !"#$ %'~ (?)*Somewhat Successful+,-./0123 46Z7DEFGHIJKSevereLM NO~ j@ Denise KappelWhite# Airline Reservationist/Mom      12 !"#$ %'~ (@)*Somewhat Successful+,-.Somewhat Successful/0 Successful1234reconstruction or remapping of veins was part of first surgery so could provide blood flow to new tissue that was implanted. Some of tissue took but most did not.5}6tDid a couple of fat implants around eyes but none of them took. Fat was taken from my leg twice and my omentum once.Z7@@@?????DEFGHIJKSevereL"@@MN~ O?~ k@ Louise Smal IT Technologist    I always complain about pain in my joints and muscles - my knees, elbows, neck, lower back, chest bones and muscles, ribs, etc. They have done tests for rheumatoid arthritis and Ankylosing Spondylitis (sorry, spelt it incorrectly in the first section of t 21 not entirely sure, but there was a long space of time where I didn't get any of the symptoms. Sometimes I think the right side of my face is getting even smaller, but it could judt be my imagination.!"#$%&I don't drink or smoke, but am slightly overweight. I did lose some weight at one stage and it made the fatter side of my face match in better with the thinner half (if that make any sense). Sometimes when I'm under too much pressure at work or home, I se'~ ()*+,-./0123 456I'm not on any medication. The Professor I seen in 1999 explained to me that I could have the operation where they take muscle/tissue from another part on my body and implant it (this would mean more than one operation), but to be honest, I'm scared. So bZ7@?@@???@@??DEFGHIJKModerateL(@@M NO~  k@In the last six months my hands and feet have been noticeably cold, but do not change colour with the cold weather. We have not had any Winter to speak of on the Sunshine Coast with temperatures ranging form 13 - 25 degrees Celsius.Narelle Dorothy Cox Australian Teacher O Positive  lcJust recently my jaw was so sore that I thought I'd dislocated it somehow, but it has never locked. !"#$ %'~ ()*+,-./0123 46Z7?@?@DEFGHIJK Very MildL@?M NO55~ 5@k@5556 Raymond Woolf 6USA 6 Contractor 6A 6Pos 5 55555555555555 6 65 65 !5"#5$5% &6 '6 (60)5 *6+5 ,6-5 .6/5 0615 2635 46 56 66Z75?5?555?55?5?5?5?5?5?55?DE5F5G5H5I5J5 K6MildL5@5@MN~ O?55~ 5k@5556 anton veugen6dutch 6 air force 6O 6Positive 5 55555555555555 6 65 69-115 !5"#5$5% &6 '6 (64)5*6Somewhat Successful+5 ,6-5.6 Successful/5 0615 2635e46\rhinoplast, had some of the skull put in my cheek and muscle from my arm into my cheek area.56 Successful 66Z75555555?55?5555@5DE5F5G5H5I5J5K6ModerateL5@5MN~ O?55~ 5k@5556Nina Sofia Abrahamsson6European 6 Schoolchild 6 6 5 55555555555555 6The bruce is on the jaw6 occ back pain56almost immediately5 !5"#5$5% &6 '6 (60)5 *6+5 ,6-5 .6/5 0615 2635 46 56 66Z755555?55555555?5DE5F5G5H5I5J5 K6MildL5@5M NO55~ 5k@5556Yuxi Fu6Asian 6 Scientist 6O 6Positive 5 55555555555555 6 65 6185 !5"#5$5% &6 '6 (60)5 *6+5 ,6-5 .6/5 0615 2635 46 56 66Z7555?55?5555?5?5?55@5DE5F5G5H5I5J5K6SevereL5@5?M NON#OO@O %OO#h@) %BM NAnx ODep!BY~? D D  O& H@% OAZ- @Q@ % PositiveAZ$ @% AZ$ "@% AZ$@%AZ$@%AZ$%AZ$"@%AZ$3@%AZ$@%AZ$<@%AZ$<@%AZ$0@%AZ$@Q@%AZ$@@%AZ$N@%AZ$@Q@%AZ $W@%AZ$=@%AZ $!4@!%!!AZ"$#:@#%##AZ$$B@$%$$AZ$%%%6%%AZ& 'AV#(~@( %((B$)S@*%))AZ$*.@(%6++AZ$+0@)%++AZ$,C@)%--AZ-$.6@-%//AZ/$0/%11AZ1$2A@%633AZ3$42%655AZ&5D$EY@E%EEAZ$F2@F%FFAZ$GD@G%GGAZ$HC@H%HHAZ$Ib@,%IIAZ$JU@I%JJAZ KLM Significant'NV@N%LL>7AZ'O3@N%MM>7AZ!BB)?4 D D  A& I@ % AAZ- <@ % NegativeAZ Lupus  Scleroderma RARaynauds MS IBDThyroid Ank SpondEye inflammationAsthma CFS DepressionVitiligo Cold HandsProbs with JawDDD$*%DD%%6%%B& 'MEDi#(.?$ %((BN)LM Highly sig(NJ@N%LL>10AZ(O"@O%MM>10AZ!Bh ?% D D  AB' ? % ABAZ D ? DD DDzz? DD? DD ? DD&a&a? DD&a&a? DDPP? DDWjVj? DDZZ? DD;;?O DDWjVj? D D11? DD0 0 ? D !DAA? D!"#D?! D#$Dzz?# D$%Stress(&%6&&AZ '() Successful6*'ى؉?* %*+ SuccessfulAZD)6+'?, %,, SuccessfulAZD+,5-' 5P?+%.. SuccessfulAZD,.5/']tE?.%00 SuccessfulAZD.0'''354'?0%55 SuccessfulAZD2 56=7'&'%688 SuccessfulAZ%688B 8D)EU~r!f?FDE%EEB)FUt*) '?GDF%FFB)GU+2_?JDG%GGB)HUzWd4q?EDH%HHB)I'&c?HDI%IIB)J' HɅ?IDJ%JJBK''O!BƓ[0AZ)Somewhat Successful?*'! ?*)%*+Somewhat SuccessfulAZD)>+'?+(%,,Somewhat SuccessfulAZD+,>-'k(?-(%..Somewhat SuccessfulAZD,.>/'/袋.?/(%00Somewhat SuccessfulAZD.0'''3>4'?4(%55Somewhat SuccessfulAZD2 56F7'&0%688Somewhat SuccessfulAZ%688B 8DELine?F Corner of EyeGMiddle of EyebrowH Near middleI Jaw / CheekJ Chin indent KLM SignificantN'n۶m۶?O DNO'4ևи?N DO Denomin# ^@ % B  Lupus@D 'PP? D6() Unsuccessful8*' ?*"%*+ UnsuccessfulAZD)7+'?+!%,, UnsuccessfulAZD+,7-'(?-!%.. UnsuccessfulAZD,.7/'tE]t?/!%00 UnsuccessfulAZD.0'''374'?4!%55 UnsuccessfulAZD2 56?7'7)%688 UnsuccessfulAZ%688B08LM Highly sigN'Tr ^N?N DNO'?O DO   Scleroderma"@D 'zz? D6() No ratingP*N Pos( wDT0s45Z,HI>S_w< (   p  6NMM?IQ]`#$  "#??3` !3` !4` !5` !62c03d23 M NM4 3QQ ;MMQ ;LLQ3_4E4 3QQ ;NNQ ;LLQ3_4E4D $% M 3O&6Q4$% M 3O&4Q4FA 3OS 3 b#M43*#M! M4%  /aM3Oc&5Q .Number of Respondents'4523  O43" 44% G M03O&3Q N%How bad would you rate your disorder?'44eee xx  6pXPP?  n]4@p\$$ knA/yvX  < JSTONE: Pos< , [xx  6XPP?  n]4@%$ ¨{2O49wܐX  < JSTONE: Neg< , xx  68‰XPP? *+]4@8‰%$ *cI7sKm`WX  < jstone: Fat< . xx  6‰XPP? ,-]4@‰T&$ 9ݓI.| eX  < jstone: Fat< .  JSTONE)jstone+jstone JSTONE>@ THP X`hp x 1 Coup de sabre overlapLine and Cheek Survey 2Sheet1Survey 1 - FinalParry_Patients with new dataSurvey_2_finalChart1  WorksheetsCharts 6> _PID_GUIDAN{11CC54D8-8BDF-4B27-B453-485B8CB20F55}ئA7ow^R[/۷ߙ{o~g2g >yPYŭt:V绚-ג!>Gd!.tL7Gq Fi3iqZ\=ioog!N V+iDESTAx:'8g8޴T+GkmgϛK7u?Oy7\ӊ*6a_%/ox 2gmɋF|81/N({%op Ԋ }#DwMA_ 2m\ptNA_, Gc夭M'Rܲؼ=ueUwt0یaۍ(cc𾣿&>fwˑ耞N~4W??7ܸ7͟RhxLnz'i9"D)`$'Oy̛< 3ṬB+!8zrR,{O_^D:::|99ފ}"$X b5)ݻטR$Xr:;;9,GB` j߾}X+b kڿ1$Xz8` )6cmBBV[6jEB`o&Xb [1ڂ[JToo1V$h#Gc!!6uQcmHHDcmGB` رcX;b';:~1N$ nv#!ED:{1VRQΝ3:>Mԅ N#!yuEcHH1 QXHHq+D c]AB)RHHyqQ.]2\RDuecRU@1VRāuUc8Rj&Q###X3b6Pv1l$(ׯc !EQ7n0J !E%PDR)cJ$n޼i5 )5gyI֭[ !EPu>ouIQz=y5VKZ5)̧/CM twE}l]Xp<ߎ=/^WQj(q~R~+I-?eN^b*y1g譯 o}q׫ٽ9_^c`:,QϬKg,T7>c3*6e|FuR,6oT!/۰C,ܫ;ğb!,P]UbB,uTWo%j,6ǒ/7OXl7ڍ`y?$ȜdϩfYu ;WMwuViUq8izFJVVKZ-i{w_[|noIH{{c)&vi)Ҟ<ͱJZ+i]ugZVƾVڿg;zV}27jR4SPyY*|ZUO]ʧj> WAmrAw*yJ&ec@XkjcneR^(F=X[&QQ}k+:ݩIT^JS[ұcmUyJqjk~\o+7|qw缞V#8_Wgwf5ڳW77ƆdSsi> %xS;Z1xhO5uOgSM6C{-e@| Ӄ? Gп.fE8O=`454i\Ń=Tw":[oo|Ysn}4:v>srd_ܒSummaryInformation( DocumentSummaryInformation8pCompObjjOh+'0 4 DP l x  <PARRY ROMBERG SYNDROME THE GOBAL SURVEY OF HUNDRED PATIENTSARRann houlistonSYnn nn  Normal.dotoEUCSl.d6CSMicrosoft Word 10.0@0@[@_@$@ ) ՜.+,0@ hp  Dept of Clinical Neurosciences4  A <PARRY ROMBERG SYNDROME THE GOBAL SURVEY OF HUNDRED PATIENTS Title  FMicrosoft Word Document MSWordDocWord.Document.89q8@8 Normal_HmH sH tH P@P Heading 1 $*$@&CJOJQJmH sH uL@L Heading 2$$@&a$56CJOJQJR@R Heading 3$$ @@&a$5CJOJQJF@F Heading 4$$@&a$ 5OJQJL@L Heading 5$$d@&a$ 6OJQJX@X Heading 6$$xx@&a$5OJQJhtH uD@D Heading 7$@&5CJOJQJDA@D Default Paragraph FontVi@V  Table Normal :V 44 la (k(No List 0U@0 Hyperlink>*B*,X@, Emphasis66B@6 Body Text1$CJ(W@!( Strong54@24 Header  9r 4 @B4 Footer  9r .)@Q. Page NumberFP@bF Body Text 2$da$OJQJJQ@rJ Body Text 3$da$ CJOJQJVC@V Body Text Indent$<^<a$ CJOJQJHH pc Balloon TextCJOJQJ^JaJ !   !$. j*jOj:;qr<=z{}~HI[\3 4 t u j k 9 :   _ ` b c O900$ H0@Oy00$ @0@Oy00$ @0@Oy00$ ,@0@Oy00$ .@0@Oy0 0$ (/@0@Oy0 0$ h@0@Oy00$ 4i@0@Oy00$ 0.@0@Oy00$ h.@0@Oy00$ 8@0@Oy00$ p@0@Oy00$ @0@Oy00$ |/@0@Oy00$ /@0@Oy00$ /@0@Oy00$ H@0@ Oy0"0$ \0@0 `Oy0$0$ 4h@0 `Oy0&0$ lh@0 `Oy0(0$ h@0 `Oy0*0$ h@0 `Oy00$ @0 `Oy0.0$ f@0JDb`Oy000$ f@0Oy020$ f2%Oy040$ Tfw7z Oy060$ f@0Oy080$ f@0Oy0:0$ $B5Oy0<0$ \wz Oy0>0$ @0Oy0@0$ @0D`Oy0B0$ @0O900$ :;<=>?   .9qr<=Q 4z{|}~HI`[\r3 4 A t u  j k 9 : K    _ ` a b c 00 0 0000000000000000000000000h0h0p0 0 p0 p0 h0p00/0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/ 0/0@0@0q@0@00<q00000000 :;<=>?qr<=z{}~HI[\3 4 t u j k 9 :   _ ` b c 000 000000000000000000000Oy00P$G7H Oy00$D,7Oy00$G7Oy00$K8 |  Oy000$JX;0 x Oy0 0Լ$E@5 p|XDOy0 0ܾ$ZK70  Oy00$G: t M90Oy004$H7M90Oy00l$Oy00t  Oy00\$VL8D x d  Oy00$J88L L Oy00$R@ 0Oy00$"@0`*`Oy00L$@0Oy00$N0, X 0 Oy0 0<$NԼ,@ p|Oy0"0t$Nܾ,X 0 Oy0$0$@0Oy0&0$@0Oy0(0$@0Oy0*0$@06\Oy0,0L$@0;GOy0.0T$@0Oy000$@0Oy020ā$@0Oy040$@0Oy0604$@0Oy080l$@0Oy0:0~!@0Oy0<0~!@0Oy0>0 !@0)Oy0@0X!BItDz O90 #################& dGd 3   q <  z}H[3tTZ&dGd  !"#$%&'()*+,-./04Fd  &!$:l  ,2$>^Xpj@ (  N   S  A ?B S  ? Q?2* 4 OLE_LINK1  +M ;FOZr        > B  .34Pr 3333?rQ ~I`+rA u k : K    JSTONEJSTONEJSTONEJSTONEJSTONEjstonejstonejstonejstoneEUCS3  k* ?M) 9 1>nl-RdN r  hh^h`OJQJo( hh^h`OJQJo(hh^h`. hh^h`OJQJo(hh^h`6o(.h   ^ `OJQJo(h ^`OJQJo(oh ^`OJQJo(h | | ^| `OJQJo(h LL^L`OJQJo(oh ^`OJQJo(h ^`OJQJo(h ^`OJQJo(oh ^`OJQJo( hh^h`OJQJo(9k*N r?M)3 1>-R           UsASDL*sTpcY{e 12:;9qr<=Q z{|}~HI`[\r3 4 A t u j k 9 : K    _ ` a b c z RMRefListBookmark׉ RMSetupInfo׉#RMRefList_3_Neurology_Romberg_Draft2B473A5C444154415C5245464D414E395C50524F4752414D5C5374796C65735C4E6575726F6C6F67792E6F730A5265666572656E636573000A000000000000000000020000000100010000010000022E20000200010005417269616C0A000000000000000000000001000000000000A2386C25A07600010000002CE3620028E26200A4E2620001000000A8E26200@--Jvv--p#4 @@@@(@@@UnknownG: Times New Roman5Symbol3& : ArialA& Trebuchet MS?5 : Courier New5& zaTahoma;Wingdings"qh uFv&UrF  4  4A24d 3QH(?pc;PARRY ROMBERG SYNDROME THE GOBAL SURVEY OF HUNDRED PATIENTS ann houlistonEUCS(