Marfan syndrome

[Microwaveexpert]

Hi everyone, im just looking for some advice or guidance.
My son has recently been told he may have marfan syndrome. He has all the symptoms and traits but now waiting to see a consultant and I'm obviously pretty worried.
Was just wondering if anyone here has any experiences they would be willing to share with me please.
Hes 16.

Hi @Microwaveexpert - just asking how you got on?

I am wondering what symptoms your son has. Mine is 14 and although is terribly short has pectus carinatum, a heart murmur and extremely elongated hands, fingers and feet / toes. He has a regular paediatric appointment in a few weeks with a new paediatrician as his old one retired and I am going to mention it. It was mentioned in passing only when he was diagnosed with pectus carinatum.

I hope you and your DS are okay.

I haven't got any direct experience, but I think it runs in families - I knew someone who had it and both her children. It didn't affect her too much, and I can remember her DH saying to me it was her health issues that had more on an impact on the family.