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 told the same years ago in the UK. Specifically I was told "we don't call hypermobility EDS anymore". Its bullshit. Doctors in general don't have a clue about EDS or HSDs and will just lie to your face because they think you're mad. Who was your niece assessed by? I gave up on being diagnosed by the NHS after years of obvious EDS and comorbid symptoms because they were incapable of putting multi disciplinary illness together. A geneticist or rheumatologist who specialises in hypermobility disorders is really your best shot of finding out if this is what is causing your nieces problems. I'm so sorry about the experience you've had I really empathise with it been there

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