Does anyone have Marfans Syndrome, how does it affect your life?

Question

I have marfans syndrome and have had aortic valve replacement if anyone would like any help or adive about the disease - let me know - thanks

Answer 1

Yes, finally someone asking a question about Marfans!
I need advice about it too ...
I was born with CDH (dislocated hips) that I had corrected by surgery twice (but they didn't make a very good job of it!) so I still have problems with it sometimes.
Anyway, about 2 years ago, I was referred to a specialist who was going to have another look to see if anything more could be done. To my surprise, he started looking at the length of my fingers and toes, and the roof of my mouth, and asking about my eyesight etc. Then he said 'have you ever been tested for Marfans? because you look like you have it to me'. That was all he said about it. No referral for tests or anything. When I went back for a second appointment, another specialist was with him, he had a look too, and said the same thing. But no one has sent me for any tests or anything. My GP won't send me for any, because she says she has not been told about any of this.
I have done the reading about it, and I know I do seem to have a lot of the characteristics - I have:
short sightedness
joint hyper mobility
tall, slender figure
long limbs
crowded teeth
asthma
and i get this weird fluttery feeling in my heart, which I really hope is not related.
Does it sound like Marfans to you? What do you think I should do?

Answer 2

http://myweb.tiscali.co.uk/darrenmcdean/marfan/
http://www.marfan.org/nmf/index.jsp

You will get better answers about Marfans by using the links above than by asking here. The second link is American, some information may not be relevant in the UK.