One of the most depressing aspects of Parry-Romberg Syndrome is the fact that people familiar with this rare, yet-to-be-cured disease are almost as hard to find as those who have it. PRS victims account for fewer than 200,000 of America’s 300 million plus citizens.
Consequently very little effort is being made to fund PRS research, or even to let people know that the disease exists. Exceptions are a hard-working group in Carmel, Indiana called Parry-Romberg Syndrome Resource, Inc. and, as of this writing, the Feds. Specifically the Committee on Health, Education, Labor and Pensions.
In typical bureaucratic style, this committee is now studying a bill (H.R. 2408) that has already been passed by the House of Representatives which, when approved by the Senate, would make research funds covering PRS accessible.
A VERY SPECIAL PATIENT
Meanwhile, waiting for a reason to hope are heart-broken families and friends of PRS victims who are all too aware of the destructive power of this disease—both physical and psychological. Victims like my dear friend, Owen.
Right now this lovable, outgoing, super smart six-year-old is happily juggling a schedule that includes everything from flag football and Cub Scouts to piano lessons and bike riding. He’s a world class charmer, too. Mothers of girls at school tell his mom that their daughters are always talking about him. So are his teachers, who praise Owen as an outstanding student.
The other unhappy side of this story is the indented vertical darkened line of skin extending from Owen’s forehead to the area between his eyebrows. This is the onset of PRS, which usually strikes between the ages of five and 15—cause, like a cure, unknown.
SADLY, SO MANY PROBLEMS
PRS brings on a litany of symptoms that include seizures and pain plus vision and dental problems.
The severity of these and other symptoms vary among patients. But one generally common characteristic is a slow-moving, progressive deterioration of the skin and soft tissues of the face. Since there is no cure for PRS, plastic surgery is the only alternative to resulting facial distortion. And there is a possibility that the procedure will not be successful.
Progression of the skin and tissue deterioration often lasts “from 2 to 10 years, and then the process seems to enter a stable phase,” according to an Internet report published by the National Institute of Neurological Disorders and Stroke.
RAYS OF HOPE
The best that can be said about PRS at this time is that in some cases, “the atrophy (deterioration) ends before the entire face is affected. In mild cases, the disorder usually causes no disability other than cosmetic effects,” according to NINDS.
Obviously, considerable research as well as increased public awareness is urgently needed to fight this insidious disease. If, for some reason, you’re not convinced of just how urgent the need is, think of Owen.
Then Google prsresource.com.