Talk to me about EDS please?

[lisad123]

Dd2 has hypo mobility and dd1 has the stretchy skin that goes with EDS but has tight tendons due to club foot.

I have got myself in a bit of panic because of dd2. She has had continual burst blood vessels which come up like a meningitis rash. I mentioned it to my sister who said it could be EDS because she already has the hypo mobility.
Of course I did the stupid thing of googling
Now it says there are different levels of EDS and certain ones are more serious when blood vessels are involved.
I'm not quite sure who to ask for further advice? Paed? Physio? Genetics team? GP or someone else?
Dh is under the specialist blood team because of the leukaemia so could ask them for advice but think they only deal with adults.
Want to get onto this ASAP, so any advice to arm myself with on Monday morning would be great.

Do I need to ask for certain tests?

I think your quickest recourse would be to talk to your GP first. Go armed with printouts about your concerns if needs be.

And you'd find more on google if you searched for hypermobility as opposed to hypo (hyper - more, hypo - less, both took me an age to type, anyhow, thanks to a long week + wine )

Knowing my GP she's unlikely to know who to refer to. Who would be best person to ask for?

Probably a rheumatologist. A good rheumy would refer you on if they thought you had a genuine concern that they couldn't deal with.