There is a new documentary in the works about Marfan Syndrome called, In My Hands. I saw a (very long and rough) cut of the movie at the conference last summer. I discovered a little clip on YouTube.
This clip is a bit depressing as the one sister suffers from a lot of body image issues. But overall the film gives a really real glimpse of the types of things people wth Marfans have to overcome.
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