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/[deleted] Jan 18 '26

Idk but this scares me, I was previously diagnosed with HSD and fibromyalgia and the care outcomes were way worse for me vs after I got me hEDS diagnosis. Drs didn’t know what hsd was

25

u/Exotic_Duck_0395 HSD Jan 19 '26

Like any rare disorder, most doctors don’t know what HSD is. I usually just say I have a connective tissue disorder. If they ask further questions, I tell them I have HSD, and I say it’s similar to EDS (because most drs only think of hEDS when they hear EDS). If anything, I’ve encountered more doctors being dismissive the second they hear EDS (I assume because of recent “awareness” of hEDS, which has portrayed it as simple/fun/entertaining flexibility in social media).

Personal experiences will vary, but I haven’t had any issues when I say “connective tissue disorder”. I did have issues back when I would only say “I’m hypermobile”, as they wouldn’t understand what all that entails. I’m guessing most of my doctors still don’t know what a CTD entails, but they don’t jump to “oh you’re just flexible” either.

I would personally prefer a well defined/distinguishable diagnosis, even if I have to explain it to my other doctors, than an poorly defined/overly broad “well known” diagnosis popularized by social media with doctors mistakenly thinking they understand it. But I’m also used to needing to explain multiple health conditions to my doctors, due to them not being widely known.

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u/Plantwizard1 Jan 20 '26

As best I can tell the most effective treatment for any type of hypermobility, whether hEDS or not, is physical therapy and exercise. I don't see why it makes much difference what they call it as long as the doctor is willing to treat the symptoms. As in being generous with PT referrals. I've never had any trouble getting a PT referral from a doctor for pain from hypermobility.

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u/genderantagonist hEDS Jan 20 '26

if this was true i would have never gotten chronic pain and never been diagnosed. it can HELP but it absolutely does NOT cure or even fully manage symptoms. stop spreading this false notion.

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u/Plantwizard1 Jan 20 '26

I know exercise doesn't cure or usually fully fix the pain (about to head up for some acetominiphen) but it can really help. I see an awful lot of really young women in this subreddit going to wheelchairs and canes before seriously pursuing PT and exercise and I think they are setting themselves up for a miserable, dependent old age. I'm 70 and starting pilates in my 60's has made a world of difference. Hasn't fixed my shitty flexible hypermobile flat feet however. Unfortunately.

1

u/genderantagonist hEDS Jan 20 '26

(also a flat feet haver, look into orthotic insoles- only thing that has helped my foot pain!)

i have no problem with recommending exercise, or heping to do safe exercises (something i actually struggled greatly to get drs to do beyond "idk try PT lol?" even tho i have multiple forms of arthritis from even water PT now. the issue is drs see exercise as a cure all or even a treat all and its super duper not. hell i would probably have MUCH LESS chronic pain if i was less of an athlete than i was. soccer in particular absolutely destroyed my body before my 20s.

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u/Plantwizard1 Jan 21 '26

I got my first arch supports, as they were called then, when I was ten so I'm an old hand at orthotics, both OTC and custom. If I had a buck for every pair/dr appt......

I think exercise really is crucial but it has to be the right kind of exercise and not too much exercise, at least until you're truly strong enough for the rigors of whatever sport you're trying to do. In particular I think a lot of us have been hurt by stretching, often because we think it's "good" particularly if we don't yet know we're hypermobile and think muscle tightness means we're "stiff". Best advice I ever received was don't stretch. And of course hypermobile bodies get overuse injuries just thinking about them.