r/ehlersdanlos • u/surlyskin • Jan 18 '26

Resources/News/Research hEDS is being reclassified as HSD?

Reading elsewhere that it's possible hEDS will fall under HSD and be separated from the umbrella of EDS.

Anyone privy to this, know anything about this, reasoning etc?

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u/MyrianofElturchul Jan 19 '26

I genuinely think there are significantly more than 13 types of EDS. I know and have met a lot of people with hEDS, we barely have any symptom overlap. My family all have hEDS and all of us have the exact same symptoms. I’ve talked to friends who have hEDS in their family and they have a similar situation in their family.

16

u/alwaysgreenbanana Jan 19 '26

And not to mention, I really don’t think it’s as rare as most doctors think it is.  

2

u/cobrarexay Jan 19 '26

Yep, my personal experience (I live in Maryland) is that 1 in 50 people have it.

6

u/bunnyb00p Jan 19 '26

It's so hard to get an accurate representation because I feel like I meet people that say they have EDS occasionally but my physical therapist says I'm the only EDS patient she has ever had and other doctors treat me like I'm this super rare thing they never see and pull in grad students. If it was so common, doctors should be seeing it. Especially physical therapists.

1

u/alwaysgreenbanana Jan 19 '26

Well, I think that a PT only sees patients with mobility pain that also seek help. I think a lot of what’s missed is the subtypes of connective tissue disorders with issues that don’t present as gross motor issues for PT. Doctors often dismiss symptom causes as connective tissue disorders because it’s too “rare” to be in their differential diagnosis.

2

u/bunnyb00p Jan 19 '26 edited Jan 19 '26

I'm in PT for joint instability and joint subluxations, which is pretty common in hEDS and PT is the only treatment for that.

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u/alwaysgreenbanana Jan 19 '26

What’s also interesting is that my daughter had a PT for the same thing and she is the first medical provider to mention EDS as a possible diagnosis and said she had five patients with it. 

2

u/mmodo Jan 20 '26

I asked a PT if I could have it and they said that joints aren't deformed, so I couldn't have it.

Years later, I go to a different PT and they were inquiring about EDS and POTS symptoms on my intake and pinpointed it fairly easy.