Lindsay's Story

My ten-year old daughter, Lindsay, has Parry Romberg. Her symptoms started when she was three with a bright red, violacious rash on the left side of her face. She was not diagnosed for almost two years although she was seen at children's hospitals in Nashville (Vanderbilt), Cincinnati, and Milwaukee. The redness started fading; then subsided only to start the slow, atrophic process where the redness once was. She also developed problems involving her left eye. She had a total of three seizures during the first five and a half years.

Approximately 18 months ago, her seizure activity increased gradually. Last winter she was averaging 20 to 30 seizures a month. She also now has developed problems with her speech, (apraxia, aphasia) and is having problems in school.

Lindsay is being treated by wonderful doctors at Children's Hospital Medical Center in Cincinnati. She has received steroid therapy which has been somewhat successful. She has also taken Methotrexate. She is currently receiving IVIG therapy monthly and Cytoxan therapy every three months. Her seizures are averaging 6 to 8 a month. We feel we're going in the right direction although we're not entirely sure why.

Her atrophy currently is very slow if at all. She has coup de sabre. Her opthalmic involvement at present is under control.

Lindsay's primary doctor is a rheumatologist. He currently has one other patient who has Parry Romberg. He is very interested in learning everything he can about Parry Romberg.

We are very interested to learn anything we can about your symptoms, any treatment tried, whether successful or not, your history, age you acquired, if it is currently active, remission, any research you have done, ANY ANY information at all. We also would like to share our experiences and information.

Unfortunately no one has the vested interested we all do about Parry Romberg. Let's share our information so we can hopefully learn all there is to know about this horrible disease.

Feel free to leave a message for Lindsay's parents at rombergs@hotmail.com.