PARRY ROMBERG SYNDROME THE GOBAL SURVEY OF …
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
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(E) - Figure 2. Age of Onset
Table 1: Parry-Romberg Syndrome – Clinical Characteristics of 205 respondents – extended data
|Demographics | |
|Sex |165 Female: 40 Male |
|Age (median, range) |32 Years (range 4-64) |
|Country of Origin |USA (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. |
|Diagnosis | |
|Age 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 severity |Very Severe (7%), Severe (24%), Moderate (36%), Mild (23%), Very Mild (8%) |
| | |
|Location Affected | |
|Face |100% ( 46% left, 52% right, 2% bilateral) |
|Forehead - involvement |63% |
| – with a line |51% (10% in the corner of the eye, 20% in the middle of the eyebrow, 19% within one centimetre of the |
| |middle, 1% unspecified). |
|Lower Face |75% Cheek, 43% Chin, 55% lips, 50% teeth/gums , 25% tongue |
|Arm, Trunk or Leg |9% Arm( 74% ipsilateral), 14% Trunk ( 81% ipsilateral), |
| |10% Leg ( 75% ipsilateral). 19% any involvement of arm, trunk or leg. |
| | |
|Other Symptoms | |
|Epilepsy |11% (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 Pain |52% Migraine (lateralised in 55% - 90% of these pain ipsilateral to hemiatrophy) |
|Facial Pain |46% Facial pain (always ipsilateral to hemiatrophy) - ranging from 'dull ache' to electric shock type |
| |pain. Occurring equally in left and right hemiatrophy |
|Eye / Vision problems |46% (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 sabre’ |
|Jaw problems |35% jaw pain or difficulty opening or closing jaw. |
|Depression and Anxiety |46% anxious, 10% depressed (HAD score≥8). |
| | |
|Possible Aetiological Factors |
|Genetic |Six (3%) patients had a relative with facial asymmetry. |
| |None formally diagnosed (orbital asymmetry had been confirmed medically in one). |
|Autoimmune Disorders |Vitiligo (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 onset |12% reported an injury they felt was relevant to their condition. |
|Pregnancy / Childbirth |26% of patients reported acceleration of symptoms (68% of these were women during pregnancy or |
| |childbirth). |
|Lyme Disease |3 patients tested positive for Lyme. None had clinical disease. |
| | |
*More than one diagnostic label allowed
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