Who has heard of marfan syndrome?

i have it. and was wanting to know if any doctors, nurses, or people who have it or have heard of it are here. thanks!

Yes, I have it, my sister has it, my mother had it. I am also part of 2 support groups, so if you would like to meet a couple dozen or so other people with Marfans. please feel free to contact me and I will get you in! We have a lot of knowledge about all phases and problems associated with Marfans and we range in age from 17 to 60. So you never know, you just might make some new friends!

http://www.cedars-sinai.edu/4020.html?wt...

Try that

I have Marfan Syndrome also. There are some great doctors who have spent many hours researching it and leading the hospitals and medical institutions they teach at.

A lot of information including doctors and hospitals that specialize in treating Marfan can be found at marfan.org if you are in the US. There are other organization sites also if in another part of the world.

As the person ahead of me said, I'm in some online groups and we have a pretty good network of support also, including people around the world. Contact one of us and we'll help you as much as we can.

There's a new independent film out starring one of the kids from Malcom in the Middle that is about a young boy growing up with Marfans. It's called Mo and the imdb link is here - http://www.imdb.com/title/tt1010027.

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