I have a friend who has Marfan syndrome and who also is an advocate for individuals with this syndrome.
I asked her to explain it to me from the point of view of athletics....
Here is her reply...
"Marfan's
doesn't exist on a spectrum. If you have the genetic mutation, you have Marfan's Syndrome.
How the gene is expressed can vary between individuals because of the rest of your genetic code, but most of the variation is skeletal rather than cardiac in nature.
I am in several forums and Marfan support groups, and everyone with Marfan's, at some time in their life, develops the cardiac issues. The only difference seems to be when, and the degree of stress put on the heart and major arteries is often the deciding factor for that.
There are
several other connective disorders that have been misidentified as Marfan's because there are similarities in the expression. Identifying exactly which one it is
requires genetic testing.Participation in sports is very much individualized. High-impact (eg. triathalons) and contact sports (eg. American football)
are out because of the risks.I do know of one adult male marfling who is a short distance runner, and there are several (also adult males) who lift weights. I fence at the Master's level, but fencing is a 'slower' sport with shorter bouts and matches than soccer or basketball. I also know what my limits are and don't go beyond them. Mostly I work on the coaching side of it with the really small kids.
Some marflings swim or play baseball,
but none of the ones I know do any sports competitively. Most of the questions about sports on the forums are from parents wanting to know what their children with Marfan's can do, and basketball and football are what tend to be the sports in question.
The answer from doctors to both is usually 'no.
I know basketball coaches want tall players and people with Marfan's often have the height they are looking for, but nobody should be risking their life and health for a sport. If a coach suspects a player has Marfan's, s/he should be urging that player to go see their GP for a referral to a cardiologist and geneticist for testing and then do what the doctor(s) tell them.. The top expert on Marfan's in the world is Dr. Tirone David, who is a tenured Full Professor at U Toronto. Both are really nice people and easy to talk to." [end of letter]
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This information is a bit technical, but it also is informative....I am sending it along to fellow Beaver fans simply to enhance our collective knowledge of the topic......
GO BEAVS !!