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...

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Genetic & Metabolic
/ Marfan Syndrome Support Group

Think I might have Marfan's

deleted_user
deleted_user
Just looking for an opinion from someone who has the condition or someone knows a bit about

I think I might have Marfan's, I had a doctor suggest it, and i asked my cardiologist, he said I had the long fingers but not the heart issues, but he told me I had trace leakage in 2 of my heart valves. I'm 6'1 175lbs but look slim, really flexible, using my other hand I can bend my thumb competely to my wrist, and bend my fingers/toes back pretty far. Significantly near sighted (-4.5), severe pectus excavatum (haller index 5.8) that was repaired, osteoarthritis and slight degeneration of in vertebrae in my neck, and my arm span is longer than my height. When I was younger I had a large overbite and I had 8 teeth pulled due to overcrowding.
deleted_user
deleted_user
I was told I had a connective tissue disorder, probably Marfan's. I was advised to see a Rheumatologist but when I did I was told to see a Geneticist for the disorder. I have not made an appt for one yet. If you go see one let me know how it goes. Take Care.
deleted_user
deleted_user
Hi, I have Marfan's and I stongly suggest you look into this further. Undiagnosed/untreated Marfan's is a killer. I also suggest visiting the National Marfan Foundation website, it explains the more common complication's of Marfan's. Just a heads up if you choose to seek a second opinion, make sure the cardiologist either has a working knowledge of Marfan's i.e. other patients, or at the very least has some knowledge of the disorder.

Best of luck!!!
UlrikeCT
UlrikeCT
what are the causes of Marfans???
acromegaly is mainly caused by a pituitary tumor
deleted_user
deleted_user
Genetics
heidilykken
heidilykken
Genetics are the main cause. 5 kids have it of mine. If I did not connect the dots and do my homework about the symptoms. I would of missed it and we are having genetic testing now and waiting on results.
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