I have Marfan syndrome and I just found out recently about 2 months ago. I'm the only one in my family to have it because of a genetic mutation. If you could talk to me to try and help me on what to do because im only 17 and im really scared that everyday that i live my life i get closer to death than anyone else...
Hi, MIchael. My son, Eli is your age and he is on the NMF Teen Council. He has been dealing with it most of his life and is a very positive person. I have it too, as do my mom and brother. You can contact me through my non-profit organization, Guitars in the Classroom. We'd be glad to talk with you. Just look us up online. We can't give web addresses here.
I think this should be on tv or they should make movie about marfan syndrome the people who have this you guys are handsome and beautiful the things you do is awsome and good luck and merry chirstmas and happy new year. charlie singh not charlie sheen
I would suggest you contact our helpline at (800) 8-MARFAN x. 126, or email support (at) marfan (dot) org. They can answer any specific questions you may have and help connect you to other teens with Marfan syndrome. We have a very active online teen group that you might find helpful.
I have Marfan syndrome and I just found out recently about 2 months ago. I'm the only one in my family to have it because of a genetic mutation. If you could talk to me to try and help me on what to do because im only 17 and im really scared that everyday that i live my life i get closer to death than anyone else...
My younger brother and I have this malady
Hi, MIchael. My son, Eli is your age and he is on the NMF Teen Council. He has been dealing with it most of his life and is a very positive person. I have it too, as do my mom and brother. You can contact me through my non-profit organization, Guitars in the Classroom. We'd be glad to talk with you. Just look us up online. We can't give web addresses here.
I think this should be on tv or they should make movie about marfan syndrome the people who have this you guys are handsome and beautiful the things you do is awsome and good luck and merry chirstmas and happy new year. charlie singh not charlie sheen
I would suggest you contact our helpline at (800) 8-MARFAN x. 126, or email support (at) marfan (dot) org. They can answer any specific questions you may have and help connect you to other teens with Marfan syndrome. We have a very active online teen group that you might find helpful.