PORT WASHINGTON, NY -- (Marketwire) -- 07/17/12 -- Sudden death in an apparently healthy young athlete is always a tragedy. Yet many tragedies can be avoided, if only a parent, doctor or coach recognizes the signs of potential risk factors. That is why the National Marfan Foundation (NMF) is announcing an "Athlete Alert" to raise awareness of Marfan syndrome and related disorders that raise the risk of aortic dissection -- a tear or rupture in the aorta, the large artery that carries blood away from the heart.
"Sports will be in the headlines this summer as the world watches the Olympic games. As the Olympic torch is carried towards London, the NMF wants people to remember Flo Hyman, captain of the 1984 U.S. Olympic volleyball team, who died during a volleyball tournament in Japan in 1986 from an aortic dissection cause by undiagnosed Marfan syndrome. Her death, like so many others, could have been avoided," said Carolyn Levering, NMF President and CEO.
Marfan syndrome and related disorders affect approximately 200,000 people in the U.S. of every ethnic group, age and gender. People with the condition are frequently tall, with disproportionately long arms and legs. They often have indented or protruding chest bones; scoliosis; flat feet; hyper-flexible joints and other skeletal abnormalities. There are also complications related to their eyes. However, it is the problems with the aorta that can be fatal; the weak connective tissue in this blood vessel can lead to a tear or rupture if not treated.
Flo Hyman displayed many of the outward signs of Marfan syndrome and her early death could have been prevented. But she did not know. Following her death, her family was evaluated for the condition and her brother was found to also be affected; he had surgery to prevent a tear in his aorta and continues to live with Marfan syndrome.
Athlete Alert: Call to Action
The NMF's Athlete Alert encourages the following:
•Pre-participation Physical Examinations for student-athletes should meet minimum standards outlined by the American Academy of Pediatrics and should be implemented in all sports programs (available at: http://www2.aap.org/sections/sportsmedicine/PPEAbout.cfm). Specifically, the pre-participation questionnaire should include questions about family history of Marfan syndrome and family history of "early heart death" (for situations in which the cause is not known).
•Parents, coaches and school nurses should be aware of the outward signs of Marfan syndrome. If Marfan syndrome is suspected, parents should be urged to seek a medical evaluation for their child. This includes an echocardiogram by a cardiologist to evaluate the heart; a careful physical examination by someone knowledgeable about Marfan syndrome (often a medical geneticist); and a slit-lamp eye exam by an ophthalmologist to check the eyes. It may be necessary to see an orthopedist for evaluation or treatment of the skeletal features.
•Proper precautions should be put in place when an athlete is diagnosed with Marfan syndrome or a related disorder. People with Marfan syndrome should not play competitive or contact sports because of the risk of injury to the bones, joints and eyes. Most important, competitive sports put pressure on the fragile aorta and can accelerate aortic enlargement leading to a tear or rupture.
•The entire family should be educated about Marfan syndrome and related disorders if there is a diagnosis. In three-quarters of cases, a child inherits the condition from a parent. Therefore, it is critical that parents, as well as siblings, are evaluated so they can also receive life-saving treatment.
Safe Physical Activity with Marfan Syndrome
Children with Marfan syndrome do not need to sit on the sidelines. Although competitive and contact sports are not recommended, they can still participate in modified gym class and some activities.
According to cardiologist Alan Braverman, MD, Director of the Marfan Syndrome Clinic at Washington University School of Medicine (St. Louis), and Chair of the NMF's Professional Advisory Board, "Every activity has gradations, and no recommendation holds in all circumstances. For example, shooting baskets in the driveway is different from playing a full-court basketball game, and bicycling 10 miles in one hour on a level course is different from competing in a triathlon. To maximize safety of low intensity, non-contact activities, it is important to take necessary precautions, such as not carrying a heavy bag of golf clubs, and to avoid intense competitive efforts and weight lifting. I would recommend that each individual with Marfan syndrome talk to their doctor about physical activities, and specific activity levels, so they can exercise safely."
For more information on Marfan syndrome and related disorders, visit www.marfan.org.
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