make sure you scroll down to pages 28-30 for Gen's story:
http://www.dystonia-foundation.org/upload/newsletter_2003-11-25_122853/SeptDialogue.pdf

Read more about Gen: http://dystonia-support4u.com/viewstory.php?id=15

(Newsweek Article: "Patient Power on the Web" (Friday, September 7, 2001):

"...Sometimes the Internet is the only way for nondoctors to learn about
extremely rare diseases. When Genevieve LaGrow was 18 months old, the muscles
in her legs began to tighten up. Three different pediatric neurologists diagnosed her with cerebral palsy, and one of them wanted to operate on her to lengthen her tendons. “She would have been mutilated by that doctor,” says her father, Craig, whose family now lives in Colorado. Genevieve spent the years from the ages of 4 to 8 in a wheelchair while her father scoured the Internet for answers. Eventually he came upon a “bizarre” sounding ailment called dystonia, and then he located a New York physician named Susan Bressman. “It turned out that she was the guru of this tiny little field,” says
LaGrow. Bressman told him about a dopamine-based drug called Sinemet that can
help a small subset of dystonia patients. At 8 a.m. on May 13, 1998, Genevieve
took the medicine. By noon, she was a new person. Today, at 11, she’s a
champion swimmer...." Click here to read the entire article.