By Tim Bonfield
The Cincinnati Enquirer
Children with muscular dystrophy might live longer - or at least better - if doctors start treating their failing hearts at earlier ages. But it will take an expansion of research studies to know for sure.
So says the organizer of a group of cardiology experts gathering today through Sunday in Cincinnati to discuss recommending a nationwide set of standards for caring for young people with muscular dystrophy.
"It makes sense to begin treatment earlier," says Dr. Linda Cripe, a pediatric cardiologist with Cincinnati Children's Hospital Medical Center. "But there is no data to say if it is of benefit, nor on which medicines would work best."
Cardiologists are gathering in downtown Cincinnati along with many other experts in muscular dystrophy as part of an annual scientific conference put on by the Parent Project Muscular Dystrophy. This is the first year the conference has been in Cincinnati.
Muscular dystrophy is a term that includes more than 20 related genetic disorders that gradually destroy muscle function. The most common and among the most serious forms is Duchenne muscular dystrophy, which affects one in every 3,000 male births.
There is no cure. As the disease destroys muscular function, many boys with Duchenne MD lose the ability to walk in their mid-teens and die in their early 20s. Gradual heart failure is one of the most common causes of death.
However, patients with MD typically get referred to cardiologists in their late teens - after their heart failure has reached advanced stages and treatment has limited benefit, Cripe said.
During the past two years in Cincinnati, a team of various kinds of specialists has urged some boys to get heart failure treatment earlier in life. A few have been as young as 6 or 8 years old, Cripe said.
The Parent Project was founded in 1994 by Pat Furlong, a Middletown woman whose two sons died of the illness in 1996.
The annual conference is intended for parents to hear about the latest treatment advances and trends in MD directly from the experts. This year, topics range from updates on genetic therapy to the value of physical therapy to coping with insurance issues.
The focus on cardiology is a relatively new development in muscular dystrophy. The experts gathering this weekend hope to develop a draft set of treatment recommendations that eventually would be submitted to the American Academy of Pediatrics for use as a nationwide care guideline.
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