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Hope For Marfan Syndrome Sufferers

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Jul 10, 2008 11:48 am US/Eastern

Hope For Marfan Syndrome Sufferers

BOSTON (WBZ) ― Justin Phillips suffers from Marfan Syndrome, a potentially fatal genetic disorder, which runs in his family.

"I'm the youngest of nine.  Four of us are affected by Marfan," he said.

Dr. Ron Lacro of Children's Hospital Boston explains, "Marfan is a genetic condition that can affect many parts of the body, involving the heart, aorta, skeleton, and also the eyes."

Over the years, Phillips has been followed by a team of doctors and has learned to live with this condition. But, it's difficult to watch his two sons suffer from the same problem.

"To see my boys with it is heart-breaking, knowing they're going have to go through the same things I went through and not be able to do sports," Phillips said.

That's why Phillips' sons are taking part in a federally-funded trial to see whether a blood pressure drug called Losartan can help control the condition.

"This trial will show whether Losaran is better than the medication being used now.  If it helps, the quality of life for people with Marfan will be much improved," said Dr. Ron Lacro with Children's Hospital.

The Phillips hope that this trial will not only help their family, but future generations as well.

"I'm very hopeful, I get the newsletter.  There is so much research going on without even realizing it," Jennifer Phillips said.

Doctors from Children's Hospital and Brigham and Women's will be holding special patients clinic Friday. It's all part of the 24th annual national Marfan foundation conference taking place in Boston this weekend.

On Thursday, a Waltham company, Correlagen Diagnostics, just announced that it is the first commercial lab in New England to offer a new genetic test to diagnose Marfan Syndrome.

For more information, call 1-800 8MARFAN or visit www.marfan.org

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