The National Marfan Foundation held it's annual conference in Houston this year and we were fortunate enough to take my son, Myles. Some of you may know that he has been suspected of having Marfan syndrome, but never had a firm diagnosis. At the conference, he was seen by the top specialists from all over the country and most of them agreed that he likely does not have Marfan. However, he was diagnosed with one of the related connective tissue disorders, many of which share the same issues. They also found he has an unusual heart defect that we weren't aware of. We are waiting on test results to try and pin down which one it is so that he can begin appropriate medication and a more targeted gene sequencing. Whichever syndrome it is, it was clear to us that he has a much milder expression of the disorder than lots of the people there. (Really made me count my blessings.)
It was a fantastic conference and a real opportunity for him to meet other people with some of the same problems he has. There were loads of workshops along with clinic appointments.
So I was wondering - anybody here know someone with a connective tissue disorder, Marfan or other? It's a whole new thing for us and I wish I could have talked to people who have it. Oh, and here's a link for more info about it: http://www.marfan.org/marfan/2280/About-Marfan-Syndrome
It was a fantastic conference and a real opportunity for him to meet other people with some of the same problems he has. There were loads of workshops along with clinic appointments.
So I was wondering - anybody here know someone with a connective tissue disorder, Marfan or other? It's a whole new thing for us and I wish I could have talked to people who have it. Oh, and here's a link for more info about it: http://www.marfan.org/marfan/2280/About-Marfan-Syndrome