Marfan Syndrome

Anyone know what marfan syndrome is?
I have it
If anyone has it, please reply, i doubt i will get one tho since there arent many of us
Also, if ne one has any ?s feel free to ask me
ill answer to the best of my ability or direct u to sites that will answer your ?s

MY life is a million times better than most ppl with marfans. Mine is so mild sometimes i forget i have it. I cant play contact sports(heart murmur), I deal with my looks alot, ppl asking, "are you anorexic" telling me i should be a basket ball player b/c im so tall, my mom died from it at the age of thirty, im not sure exactly what its called but the heart pumps blood through your body so many times that your aorta gets thin, breaks, and your heart stops.

Marfanlife.org might answer some ?s about the health stuff
also theres a forum u can look thru with tons of ppl who actually have it(which is probly way more exciting for me than it is for you) =)

"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 — including the lungs, eyes, dural sac surrounding the spinal cord, and hard palate. It is named after Antoine Marfan, the French pediatrician who first described it in 1899."

Taken from http://en.wikipedia.org/wiki/Marfan_syndrome
Theres alot there about this.

XxLuciferxX

=) thanx for that
basically its a tissue disorder
how it affects me:
-mitro valve prolapse(aorta grows thiner until it bursts) the term for that is "sudden death"
it is very common for marfans patients to die from this thought it depends on the severity of your case, if your on heart meds, what activities you participate in(my mom died 5 years ago when i was 10 from sudden death)
-scholiosis(curvature of the spine) i had major back surgery for it(spinal fusion) a year and a half ago
my back rarely hurts now and im back to doing normal activities i couldnt until about 8-9 months after surgery
-appearance- extremely long legs and short torso, skinny and bony, eye problems, others i cant think of at the moment
too much writing=)!!!!!!!!!
please comment ESPECIALLY if you have marfans!!!

I'd kinda like that......being really skinny and tall. I bet you could be a model. (My attempt at making the best out of this)

Thanx for tryin but im not the model type
im not super skinny like i used to be but my hip bones stick out and in pictures i look like a skeleton

people used to always assume i was anorexic but
i eat ALOT!!! Today for lunch I had a sandwich, fries, a second sandwich, and two cookies
i dont consider that alot because thats how ive always eaten but my friends all call me fat when i get to the lunch table(= jokingly of course since its so ridiculous it isnt insulting =)
People are amazed i eat like that and i stay 115 pounds

i hardly excersize or eat healthy and no i am not anorexic or bulimic but i am starting to get the feeling i am a compulsive overeater
eating makes me feel good and i feel like im
addicted to food

i really need to gain control of that b/c sooner or later my metabolism will slow down(which happens to most marfans ppl when they get older) and it will be extremely hard for me since im so used to being able to eat what i want but i guess i should enjoy it while i can=)

hope i didnt bore you
plz write back
i appreciate your comments
=)

Well, i cant say that i ever heard of that until now, but i'm sorry that you have it, but its good that its only mild. and i am sorry about your mom=[

Thanx=)

If anyone has marfans or wants to know more about it, please comment or pm me
but plz be specific about what u want to know or ill probly have a hard time answering
i have marfans but im not an expert on it=)

Im hoping that by posting this i will raise awareness to marfans
not many know what it is
alot of doctors need to be informed about it
these are some sites that provid info:
www.marfan.org/

www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=2 - 13k -

www.americanheart.org/presenter.jhtml?identifier=4672 - 45k -

www.kidshealth.org/parent/general/eyes/marfan.html - 31k -

thats all ive got for now
sorry if this isn't a very interesting topic

-me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!