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Parry–Romberg syndrome

A global survey of 205 patients using the Internet

From the Department of Clinical Neurosciences, Western General Hospital, Edinburgh, UK.

Address correspondence and reprint requests to Dr. Jon Stone, Department of Clinical Neurosciences, Western General Hospital, Crewe Road, Edinburgh EH4 2XU, UK; e-mail: jstone{at}skull.dcn.ed.ac.uk

Parry–Romberg syndrome (PRS) is a rare neurocutaneous disorder characterized by progressive facial hemiatrophy. In this study, 205 patients with PRS were surveyed using the Internet. Estimates of the frequency of limb involvement (19%), epilepsy (11%), and other clinical and etiologic features were obtained. There was a wide range of age at onset and considerable diagnostic overlap with scleroderma "en coup de sabre."

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