Does anyone know anything about marfan's syndrome?

[AmazingGrace]

I just found out last night that my first cousin on my mom's side has this. After doing some research, I'm pretty sure my brother had it. He was really tall and thin with abnormally long limbs and extremely loose joints. He died of an infection but his autopsy showed all kinds of heart issues.
Unfordtunately, Benji is showing a lot of the same characteristics. He's very thin with long limbs and loose joints. he also has a pigeon chest and a curved(swayback) spine. So, I made him an appointment and will see what happens from there. I'm so hoping it's nothing. This kid doesn't need one more thing to deal with.

 

[rwdavis2]

My father had. Died of a heart attack at age 46. It was undiagnosed at the time. He was tall (6'5") with a long face and body. 3 days before the heart attack his cardiologist gave him a clean bill of health. I guess the problems stay hidden.
Bob

 

[dreamer17555]

I have Marfans. I am happy to answer any questions you have about but really it depending on enlargement of the heart treatment varies vastly. Souns crazy but they actually started testing me as a child when I went in for an eye exam. Something about tilted lens in my eyes.

I would like to say that Marfans isn't a death sentance but a condition that can be managed. Like I said- ask away.

-Becca-

 

[AmazingGrace]

Thank you. Are you having any problems stemming from this?? What about your children? Have they been tested? Are you seeing anything? This just sucks, because Benji's already had to deal with cancer. How much more stuff can be dumped on him?

 

[golfgal]

I know of one family that has 2 of their 3 sons with Marfans. The one issue they have had has been some pretty major eye troubles. The oldest especially. He has to wear contacts AND glasses to get his eye sight up to 20/20. I think he is having the laser surgery done to help though.

They haven't had any major health problems, they are college age kids now, but they do see their dr frequently to keep on top of things.