I was diagnosed with Marfan syndrome at a very young age. I had one heart surgery when I was 6. At the time I was born they found a hole in my heart, said it was nothing and that it should close up eventually. Well, mine didn"t and required immediate surgery when they found it again at the age of six.

For Marfan syndrome I take 100 mg olmesartan and 100 mg doxycycline once daily. I feel it has stabilized the disease and slowed down the bone loss.

My friend has Marfan syndrome; she had surgery about 4 times.