Do you know someone w/Marfan's Syndrome?

I'm just learning about it on the news. Now, I think I do know people w/it judging by their characteristics. It's strange I've never heard of it! I wonder if a lot of basketball players have it because their hands are so big and their arms long.

What would you like to know? I am a Marfan with a lot of experience with the surgeries & other problems associated with it. I am also "owner" of an on-line support group called Marfan Connection. I am also very involved with another support group called Marfans Support and Chat. Our memberships are not limited to people who have the disorder, we also welcome people who are seriously interested in it. Please contact me and I will see about getting you in to one of our chats. We have conference call type chats 5 evenings a week.

Addendum: I know several dozen people with Marfans, ranging from mild to severe.

My 6 years best friend has this. It is on the news?

I have not noticed anything about her hands or arms.

She wears a back brace, leg braces and uses a walker. The walker might be why I do not notice her arms. I can't picture her playing basketball though, I do not think she will improve with age, although I have never asked.

Charming girl, my daughter loves her very much.

I have marfans syndrome! I have had it all my life. I had complications at birth. Both me and my brother have it. I have long bones, and im pretty skinny! I am 15, 5'9", 112 pounds, and i wear a pants size 0 long! It is pretty hard to shop for jeans, but i get used to it! lol. If you want to know anything else, feel free to ask!. and about the basketball- im sure not all basketball players have it. infact. i bet only a select few have it, if any! I am not allowed to play basketball because of my condition. i can't have a hard blow to my chest. but, thats only in my case. every one is different!

My husband has Marfan's and both of my children also have it. It has varying degrees of expression so it is more severe in some people than others. Yes--many basketball players have Marfan's syndrome and are unaware of it. When an athlete suddenly dies while playing, often times he has a heart defect associated with Marfans that has not been diagnosed.

hi i am making a project on marfan's syndrome.Marfan syndrome is an autosomal dominant genetic disorder of the connective tissue characterized by disproportionately long limbs, long thin fingers, a typically tall stature, and a predisposition to cardiovascular abnormalities, specifically those affecting the heart valves and aorta. The disorder may also affect numerous other structures and organs 鈥?including the lungs, eyes, dural sac surrounding the spinal cord, and hard palate.now i need to know about people affected by this disorder.you wrote you know of people showing signs of this disease.is it possible for you to provide me with their health status and stuff?