Marfan Syndrome

I will be back to edit this more... maybe say a bit more but I just wanted to get this up here... it is a little know genetic disorder and needs more attention.

Marfan Syndrome and its a genetic thing.. its degenerative as well. I had a late diagnosis.. I can look back on my childhood and totally get a lot of my injuries.
Its a lack of or poorly produced protein that effects the collagen. It effects everything, skeletal, eyes, heart.. I have an dilated aortic root and the valves are effected so there is regurgitation which causes a flutter which is uncomfortable and sometimes leaves me light headed or makes me jump.. my joints slip in and back out or completely dislocate easily because my ligaments aren't elastic enough to bounce back after stretching out

It's pretty rare and usually caught earlier but I never had any doctor ever even mention it till about 6 months ago when a family friend who is a Doctor of Osteopathy was adjusting my skeleton and I asked him if he knew of many people who are as loose jointed as I am and if he knew if there was a name for it.. he said there are a couple things it could be.. Ehlers Danlos Syndrome or Marfan Syndrome

I googled and was really hoping it was Ehlers because Marfans was more frightening. I was diagnosed first with Ehlers because of the joint hyper-mobility and then they ordered an echo cardiogram it was to rule out Marfans but confirmed it.

When I was younger I was very athletic and this information would have been very valuable to me... http://www.scientificamerican.com/article/sudden-death-what-is-marfan-s-syndrome/
​Please take a moment to read this.