Marfan syndrome...does anyone out there have experience of this?

[Misfitless]

Just posting on behalf of my Dsis, who is worried that her sons might have Marfan syndrome.

We've been reading up on it this morning, and it seems that they do have enough of the symptoms listed on the NHS site to warrant further investigation, and to justify her concerns.

Hoping that someone with experience of this condition who doesn't mind sharing, will have some advice, or be able to tell us how it affects them. They are almost 16, btw.

TIA

Friend in her 30s was investigated for like 18 months to see if she had Marfans. They decided in the end that she has something similar but whatever she has doesn't cause her any problems, though they want to monitor her occasionally in case. I guess what I'm saying is that people can have very similar presentation without having any problems.

I hope your Sis gets some reassurance soon.

One of my friends has this. I have an unrelated heart condition and would recommend you contact Cardiac Risk in the Young (CRY) for info.

Thank you.