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UF Site Helps Muscular Dystrophy Patients and Families

There is a new website for patients and families dealing with muscular dystrphy. Sponsored by the University of Florida, the site tries to answer questions and provide support for those living with these diseases on a daily basis. With personal information kept confidential, this site provides an oasis of information and assistance.

The site, UF Answers, was designed by Hans van Oostrom, a professor of anesthesiology and biomedical engineering at the University of Florida. It serves as a locus for voluntary submissions from those affected by personal experiences, lifestyles and the progression of muscular dystrophy. Families who have lost loved ones to the disease can also contribute their experiences to help others going through a similar ordeal. `The reason that it is so important to identify things that may offer a margin of benefit, is that the realistic time horizon for a real treatment or cure is within decades, maybe sooner,` Dr. Dietrich Gravenstein, an anesthesiologist associated with the University of Florida`s College of Medicine, said in a prepared statement.

Muscular dystrophies - genetic diseases characterized by progressive weakness of the muscles that control movement - affect between 50,000 and 250,000 at any one time, according to the Muscular Dystrophy Family Foundation. Duchenne muscular dystrophy affects one out of every 3,500 to 5,000 boys, and most patients become wheelchair-dependent by 12, respiratory-dependent by their teens, and don`t live past their 20s.

`Anecdotal information is unscientific,` Gravenstein added, `but by gathering it in great numbers, we hope to pinpoint factors that are causally related to an improved disease course. Without exception, the families, researchers, physicians and the health-care community would benefit from the ability to access information relevant to a certain condition,` he said in a prepared statement.