I too have Marfan Syndrome. I was diagnosed with Marfans when I was 24 years old ~ right after my lung collapsed for absolutely no reason, which is a symptom of Marfans. I was at Northwestern University and they put me through a bunch of tests and found out that I have all the main characteristics of Marfans. It is a very serious condition and the aorta in the heart can rupture causing death instantaneously. Therefore, that is why the doctor has told your son to avoid any contact sports. I think that the school has taken it to the extreme because he is still able to go outside and play, but he just has to avoid any type of physical activity that involves lifting or anything really strenuous. For exercise I am only allowed to do aerobic type activity as well as running, walking, swimming, but absolutely no strength or weight training.
Make sure that no matter what, your son goes to see a cardiologist ASAP if he hasn't already. He needs to go every year to see the cardiologist so they can listen to his heart as well as do an EKG. Every two years I also need to go for an echocardiogram and also an MRI of my heart. These tests can detect if there are any changes in the aorta and it looks like the aorta is starting to rupture, they can repair it right away.
Also, be sure that you and your husband get tested as well. Marfan Syndrome is an inherited condition and there is a 50% chance that your children will get it. My grandfather died in his sleep of what they thought was a heart attack, but my cardiologist believes that it was Marfans that took his life. Not many people knew about the condition back in the 70s and therefore, did not know what Marfans really was.
I am not able to have any more children due to the Marfans and in fact, should not have even had my daughter. I did not tell my OB/GYN that I had Marfans ~ I really didn't think that there was any reason for him to know. When I told him right after I found out I was pregnant due to some genetic testing he wanted me to go through, I immediately was put under the care of two high-risk OB/GYNs. Because of the stress that pregnancy puts on the heart they were concerned that my aorta could rupture. I also had a scheduled C-section due to the fact that they didn't want me giving birth and straining the heart even more. I am telling you this because if your other children are girls and do in fact have Marfans, then they need to know the risks involved in pregnancy when they get older.
I was not aware of how serious Marfan Syndrome really is until I had my daughter. I now have a wonderful cardiologist who I see regularly and also am much more aware of what I can and can't do to make sure that I don't put too much stress on my heart. Please feel free to e-mail if you want more information or just need someone to talk to: ____@____.com care and know you are not alone!!