Failure to help the ‘lost boys’

From the New York Times, with video:

After more than four decades of Jerry Lewis telethons that raised many millions of dollars in search of a “cure,” the prospects for people with Duchenne muscular dystrophy are still bleak. Thousands of boys are still paralyzed by this muscle-wasting condition, and many do not live past their 20s.

It is a stark reminder of how American medicine — with its focus on breakthrough treatments — can sometimes fail a complex, rare and stubbornly uncurable disease. Single-minded in their pursuit of a cure, doctors and researchers for years all but ignored the necessary and unglamorous work of managing Duchenne (pronounced doo-SHEN) as a chronic condition.

The approach is changing at a few medical centers, which are focused on making better use of available therapies to eke out longer lives for their patients. Rather than concentrate only on a cure, some researchers are now intent on developing drugs that may alleviate the effects of the disease.

But, absent a cure, too many doctors around the country still assume there is little or nothing that can be done for the muscle-wasting condition, parents and specialists say.

“We’re in a stone age with Duchenne,” said Dr. Linda H. Cripe, a pediatric cardiologist at the Cincinnati Children’s Hospital Medical Center. She describes Duchenne patients as “a group of kids that pediatric medicine had forgotten, a group of lost boys.”

See related posts here and here and here.

This entry was posted on Wednesday, February 20th, 2008 at 6:03 am and is filed under NOT2BEMISSED, chronic illness, medicine, muscular dystrophy, research news. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post