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.
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...
How accurate is genetic testing for Marfan syndrome? If child has some features, is it worth testing? Docs check his heart & scoliosis. Is that enough
Very accurate. Yes you need genetic testing (chromosomes) to confirm Marfan Synd. Speak to the doctor and follow the advice.