
Marfan Syndrome Support Group
Marfan syndrome is a connective tissue disorder characterized by unusually long limbs. The most serious conditions associated with Marfan syndrome primarily involve the cardiovascular system. Marfan syndrome may cause leakage of the mitral or aortic valves that control the flow of blood through the heart. This may produce shortness of breath, an irregular pulse, and undue...

deleted_user
Its that time of year to remind parents of adolescents how important it is to obtain a routine physical exam, and in particular, a preparticipation sports screening for those who are active in sports. Although (and fortunately) the number of deaths in young athletes is low, a current estimate puts the number at 1 in 200,000 high school athletes die each year.
Recently, the American Heart Association (AHA) recommended a 12-element screening exam strategy where if any of these items is positive, a referral to a cardiologist is in order. I will skip over the physical exam findings that would warrant a referral and highlight the personal and family history points.
Personal history:
1. chest pain/discomfort upon exertion
2. unexplained fainting or near-fainting.
3. excessive exertional and unexplained difficulty breathing or fatigue associated with exercise.
4. prior history of a heart murmur
5. increased blood pressure.
Family history:
1. premature death from heart disease before age 50 in one or more relatives.
2. close relative under age 50 with disability from heart disease.
3. certain cardiac conditions in family members, among others including cardiomyopathies long-QT syndrome, MARFAN SYNDROME.
For further details, please see the AHA published statement in the journal Circulation (DOI:10.1161/CIRCULATIONAHA.107.181423).
Recently, the American Heart Association (AHA) recommended a 12-element screening exam strategy where if any of these items is positive, a referral to a cardiologist is in order. I will skip over the physical exam findings that would warrant a referral and highlight the personal and family history points.
Personal history:
1. chest pain/discomfort upon exertion
2. unexplained fainting or near-fainting.
3. excessive exertional and unexplained difficulty breathing or fatigue associated with exercise.
4. prior history of a heart murmur
5. increased blood pressure.
Family history:
1. premature death from heart disease before age 50 in one or more relatives.
2. close relative under age 50 with disability from heart disease.
3. certain cardiac conditions in family members, among others including cardiomyopathies long-QT syndrome, MARFAN SYNDROME.
For further details, please see the AHA published statement in the journal Circulation (DOI:10.1161/CIRCULATIONAHA.107.181423).

deleted_user
I was told that I couldn't run, jump, lift, push or pull. But, my doctor said I could ride bike or swim. I have Marfan Syndrome, so I was on modified gym, in school. I ride my bike, in spring, summer, and fall.
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