Has anyone had any experience of Marfan's Syndrome??

I need some info for a friend.

I had a friend with it years ago at school.
I just googled this link if it's of any use?

http://www.marfan.org/nmf/index.jsp#

Thanks Alice, I saw that. I'm trying to find someone who has practical experience that can give advice.

How strange, I was just looking that up in my medical book last night as I'd met somebody recently who said they had it but I couldn't remember who it was BUT I think I've remembered now, so once I've checked it out I might be able to share something useful for your friend. Is your friend young , middle or elderly? 'cos age may be relevant to advice and also how long has your friend known they have it, are they just trying to come to terms with it? Susie may be able to advose being a nurse.