MarfanLife.net | News blog

“HOUSTON, Texas — The thought of an athlete dropping dead in the midst of a sporting event strikes fear in the heart of all sports enthusiasts. We have all heard the stories of athletes such as famed college basketball star Hank Gathers who died during at the peak of his athletic career. The question is were there any warning signs or was there something that could have been done to prevent this senseless death?”

Read article

“[14-year-old] Kyle has a split uvula, one telltale sign of the genetic disease Braverman had learned about at a conference on Marfan’s syndrome, a related genetic disease.

Researchers from Baltimore described the new disease, Loeys-Dietz aortic aneurysm syndrome, just last year. The diagnosis has had immediate consequences for Kyle and dozens of other people with the syndrome. That’s unusual in the realm of genetics and medicine. Often it can take years or decades for a discovery in a genetics lab to translate into improved care for patients.”

Read article

“PLATTSBURGH - A 14-year-old boy who died suddenly Monday afternoon succumbed to complications from Marfan Syndrome.

Seton Catholic Central School eighth-grader Nicholas LaPorte went to the nurse�s office around noon Monday, complaining of pain and difficulty breathing. An ambulance took him to CVPH Medical Center in Plattsburgh a little more than 20 minutes later, and around 3 p.m. school officials learned he had died.”

Read article

“DEAR DR. DONOHUE: My son is 32. He is 6 feet 8 inches tall. Both my husband and I are over 6 feet. When he was in the Army, someone told him he might have Marfan’s syndrome. We have searched on the Internet and have found little information about this. Would you fill in the details? — W.R.”

Read article

“Scientists at Johns Hopkins have used a commonly prescribed blood pressure medicine, losartan (Cozaar), to prevent a potentially fatal weakening of arteries in mice with Marfan syndrome.

As a result, efforts are already under way with the National Heart, Lung and Blood Institute and its affiliated network of hospitals in the Pediatric Heart Health Network and The Johns Hopkins Hospital to begin a clinical trial for people with Marfan syndrome, which is expected to start in the fall.”

Read article