I haven’t heard that in the U.S. In fact, the geneticist who diagnosed me told me there is research happening on the heds type because it’s the only type that can’t be definitively determined by genetic testing. He expects that more research will bear out more types of EDS as we understand more about heds.

I was recently told I won't be diagnosed until I have a prolapse. *Until*!! I've found many people and places say 'I think you have EDS but I won't/can't diagnose you'. I can't count how many times I've been told that - and then it's not so much as put in my notes. It's heartbreaking because a diagnosis could potentially help with getting appropriate treatment, more so than a HSD diagnosis with various comorbid conditions.

I am so sorry to hear that you guys are struggling with this. I was dx’d by a geneticist here in the US. I have Hypermobile type so it was a dx of elimination. (They test for all the others, then send you an email saying you have heds) Also, EDS cannot develop into another type unless you have the genes for both types (heds and veds for example) it’s super rare but not impossible as far as I know. I truly hope this helps and good luck getting dx’d if that is what you are looking for.

In the US it’s definetly still being diagnosed and researched. I was diagnosed several years ago and have doctors who are somewhat involved with/up to date on the research which is a huge help