Article: Phelps Unintentionally Raises Marfan Syndrome Awareness

Note from the NMF

Anyone with physical features of Marfan syndrome should get evaluated for the disorder. This should include a physical exam, as well as an echocardiogram to evaluate the aorta and a slit-lamp eye exam to the eyes to determine if there is any dislocation of the lenses.

If a Marfan syndrome diagnosis is made, it is important to refrain from competitive and contact sports to limit damage to the bones, joints and eyes and, most important, avoid stress on the aorta which could lead to a tear or rupture (life-threatening situation)

If you are evaluated and you do not meet the criteria for Marfan syndrome, it may still be necessary to have an echocardiogram annually or every few years to ensure that aortic enlargement has not occurred.

If you have Marfan syndrome but are not diagnosed or treated, you are at risk of a sudden early death from aortic dissection or rupture. This is what happened to 1984 U.S. Olympic volleyball player Flo Hyman; she died from an aortic dissection caused by Marfan syndrome. The disorder was not diagnosed until autopsy.