My DD1 has just been diagnosed with it. Clinically it was a no brainer.. she has always had all the classic symptoms..the joints dislocating, the scarring, the skin , and she also has POTS. She has been referred for heart tests because she has had some problems (and a VERY slow heart rate..low 40s) and of course faints all the time, and also to orthotics as her feet have pretty much collapsed.
On the good side, she actually has an EDS specialist on board..on the bad side she is 25 , a doctor herself, and is worried about the impact on her career ...she has sensibly decided to go for GP training rather than an 'on the wards' route because she has always struggled.
She is also very very thin... very little muscle mass..is this common?
We are pretty sure that her sister and one brother also have EDS and the specialist wants to check them out as well...her brother was born floppy and hypermobile and still has to wear splints and her sister is also super hypermobile and has has had too many dislocations to count.
Is there any support out there? I'm glad she has finally got a proper diagnosis because hopefully the hospital where she is a doctor will now have to make a few accomodations for her (ie let her sit down before she passes out, at least!)
Just a bit worried as tho she's 25 she's still my baby and she gets a lot of pain :/