Marfans syndrome

[beeswa]

Hi

My child is being investigated for this at the hospital . Does anyone have any experiences with this syndrome . ?

Thanks

A bit. There are I think five major indicators and nine minor indicators. If you have enough you will get a diagnosis. The floppy heart valve is the most concerning one IIRC.

Lots of people around who have some of symptoms but not severely enough to get a diagnosis.

@beeswa Hello. My dd is also being investigated for this.

Hi all- it was mentioned as a remote possibility today for my DS1. No investigations as yet- just a referral to a physio for some of the physical stuff. But of course I have googled and am now very worried.

How are your DCs @Buttalapasta and @beeswa ?

Hi. We're still waiting for our appointments and trying not to google. Scary stuff.

I am banning myself from googling now.

ver best of luck to you and your DD.

What are the signs for this?

@WiltingLobelia You too!