Marfan Syndrome is a genetic disorder that until recently was thought to affect one in 10,000 people. Brand new data now suggests the condition is much more common. If patients don't know they have it, they're at high-risk for sudden death.
At 18, Kevin Mahony was told he had Marfan Syndrome, a potentially deadly disorder of connective tissue, affecting the skeleton, eyes, heart and blood vessels, but two months after he and Alesia married, he almost did died from a dissected aorta, a consequence that Dr. Douglas Moodie says is often fatal.
As was the case with volleyball Olympian Flo Hyman in 1986. Patients are usually very tall, have long fingers and toes, and have loose joints and flat feet. Their tall stature is what pushes many into sports.
Once diagnosed, patients are put on beta-blockers to protect their aorta. Diagnosis is made with heart tests, physical appearance and a slit-lamp eye exam. The biggest hallmark of Marfan's is lens dislocation. It's also hereditary. All three of Kevin's kids have it and are on beta-blockers.
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Dr. Douglas Moodie