No cure for me...

Paula Abdul disease could help battle neurological disorder

GENESEE COUNTY - THE FLINT JOURNAL FIRST EDITION
Sunday, May 01, 2005

By Rose Mary Reiz
rreiz@flintjournal.com • 810.766.6353

American Idol judge Paula Abdul's recent announcement that she suffers from a little-known neurological disorder could be a mixed blessing for those battling the same disease.

"I'm already calling it 'the Paula Abdul disease,' " said Cynthia Toussaint of California, a former ballerina who suffers from Reflex Sympathetic Dystrophy (RSD), a chronic disorder that causes severe, debilitating pain.

"I've been on the phone with Paula Abdul's publicist, because there's so much Paula could do to help other people with this," said Toussaint, the founder of For Grace, a nonprofit organization devoted to raising awareness about RSD. '

"She could make RSD a household name."

Abdul, 42, has said she was diagnosed with RSD in November after a series of accidents triggered severe pain. The disorder is characterized by unrelenting pain following an injury.

Added to the physical pain of RSD is the emotional pain of not being believed. Most doctors are unfamiliar with the disorder and Toussaint, like many RSD patients, was dismissed for years by physicians who told her the problem was "all in your head."

Improperly diagnosed and treated, the condition can cause permanent, irreversible damage. In Toussaint's case, she lost her career and her mobility to the disease.

"I spent nearly a decade of my life bedridden, writhing in pain, thinking about suicide," said Toussaint, who is confined to a wheelchair. "I still have days when I don't know how I'm going to get through the next minute."

Toussaint's experience with RSD is more typical than that of Abdul, who says she finally is pain-free after treatment.

"Four out of five people with RSD don't ever return to their former activities," said Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association.

Broatch is hopeful that Abdul's announcement will bring attention to what he calls "our little-known, under-diagnosed syndrome." But both he and Toussaint are concerned that the public will see how well Abdul is doing and discount the severity of the disorder.

"I hope her case doesn't make other people with RSD feel like failures because they're not cured," Toussaint said. Perhaps Abdul's case shows what can result when a patient is believed by doctors and gets excellent, early care, she added.

"Unfortunately, I'm the example of the dancer who was not believed and didn't get care in time."