A member asked:

My doc said i have marfan's disease, what can i do now?

3 doctors weighed in across 2 answers

Get confirmation: If a primary care doctor tells a person he has Marfan syndrome, the person should see a geneticist to confirm the diagnosis. If confirmed, he can get more information from the national Marfan foundation website. He should also see specialists, such as a cardiologist to check the heart and aorta, an ophthalmologist to check the eyes, etc... He can notify his relatives to check their aortas, etc...

Answered 2/18/2015

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Marfan expert: The most serious common complications of Marfan syndrome are cardiac (aortic aneurysm, mitral valve disease) so an important part of your team should be a cardiologist who is an expert in Marfan syndrome. You should have regular echocardiograms to monitor for cardiac complications. Probably you should take either a beta blocker and/or an angiotensin receptor blocker. Also, see a geneticist.

Answered 2/18/2015

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