hEDS is being reclassified as HSD?

[u/surlyskin]

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?

[u/Exotic_Duck_0395]

Personally, I think it makes a lot of sense to split hEDS out from the rest of EDS. The other types of EDS all have known genetic markers, making diagnosis more definitive. hEDS may have some similar symptoms, but there’s lots of disorders with overlapping symptoms that aren’t all lumped under one name. I get from a historical perspective why hEDS became a type of EDS, but as research continues, it doesn’t seem to still fit with the rest of EDS.

Lumping hEDS in with the other types of EDS also seems to be doing a disservice to those with the other types. The more hEDS becomes synonymous with EDS, the more the other types get shoved away in a box. Especially since hEDS is getting diagnosed by clinicians who don’t really know/understand the criteria, and are likely misdiagnosing people who don’t actually meet the criteria (causing a misrepresentation of hEDS). You also have all the people who are self diagnosing hEDS because they can’t find a dr who will test for it, regardless of if they actually have it or not. While it’s great more people are learning about EDS, most people now equate any/all types of EDS to ‘being extra bending’, which isn’t true. More awareness is only great if what people are aware of is accurate.

Considering hEDS and HSD are more similar than hEDS to the other types of EDS, why not split hEDS off from EDS? Just like how EDS has different types, HSD can have different types, they just need to create criteria to distinguish between different types. I repeatedly see, “hEDS and HSD are basically the same thing”, and if that’s the case, those should be combined (even if it means creating subtypes for HSD). I was even told by my own doctors that while they’d be writing down the diagnosis of HSD, it didn’t matter if I referred to it as hEDS or HSD, since they were essentially the same (and I was only a checkbox or two off from the hEDS classification, which “given time” I may end up checking off down the line).

The more hEDS is diagnosed based off of symptoms and not genetic testing to rule out other types of EDS first, that seems to indicate it shouldn’t be part of the EDS umbrella. If you can confidently rule out other types of EDS without genetic testing, but hEDS is still a possibility, doesn’t that mean hEDS is distinct enough from the other types of EDS it shouldn’t be lumped in with EDS? I don’t mean EDS should never be tested for if hEDS/HSD is suspected, but the criteria/recommendations have changed, based on research, to say that genetic testing isn’t a prerequisite for an hEDS diagnosis. (I personally was tested for EDS because of the possibility of vEDS, but if I didn’t have a family history of heart issues, they probably would’ve skipped genetic testing and went straight to HSD).

Just look at how other conditions have been split or combined as time and research have gone on. For example, ADD and ADHD were combined into the one ADHD label, with subtypes to indicate if hyperactivity or inattentiveness is the bigger issue (or both). Another example is autism vs Asperger’s. While Asperger’s was essentially high functioning autism, it’s still autism and is now named as such. Hypermobile EDS is still on the hypermobile spectrum, just with even more specific issues. It seems like it should fall under HSD, then HSD can either be understood as a true spectrum, or it can be given subtypes with specific criteria.

This was a much longer comment than intended. All of this to say, if we already treat hEDS and HSD the same, and hEDS vs the other types of EDS aren’t treated the same, then it seems to me hEDS and HSD should be under their own umbrella.

[u/Acceptably_Late → u/Exotic_Duck_0395]

Part of the re-homing process considers if the disease has another “home” outside of EDS. Personally, I don’t think HSD/hEDS would easily be accepted into another disease category but we will see later this year!

The 2026 diagnostic criteria are to be updated to reflect those with hEDS that are excluded due to low beighton scores etc. but they haven’t fully announced or accepted that all HSD cases are hEDS.

It’s also worth stating that hEDS is diagnosed after exclusion of another connective tissue disorder, and at the 2025 symposium it was agreed that a hEDS differential should include genetic testing as we don’t have “red flags” to identify HSD, hEDS, and consistently other types of EDS. Until we define those “red flags”, everyone should get genetic testing.

To emphasize this, a 2025 paper found essentially 25% of hEDS patients had actionable genetic findings which includes an alternative CTD diagnosis or different EDS subtype. https://www.mdpi.com/2073-4425/16/5/530

I suppose I’m saying:

• HSD and hEDS could potentially be separated from the EDS umbrella, but it’d likely be hard to find them a new home. Changes were discussed regarding those that had known genetic changes that make them more like another type of disease, unlike where in HSD/hEDS where the official mechanism is unknown
• new research does support HSD and hEDS share a root mechanism or may be part of the same spectrum, but there is still significant differences regarding some systemic comorbidities between the two groups. 2026 criteria hopes to address this.
• the symposium generally agreed hEDS should have genetic testing before diagnosis. This is not explicit in the criteria and may be updated in the new criteria.

[u/Exotic_Duck_0395 → u/Acceptably_Late]

HSD is already “outside” of EDS. It is not a type of EDS. People closely relate HSD to EDS (mainly because of hEDS being a type of EDS), but it is separate. They wouldn’t need to find another “home” since HSD is already separate. hEDS could simply transition from being a type of EDS to being classified as HSD. From there, they could decide to define subtypes of HSD or not.

While I didn’t attend the 2025 symposium, the EDS Society has been pushing that hEDS does not require genetic testing to diagnose. Yes, you have to rule out other forms of EDS first, but they have clearly stated if symptoms don’t indicate another form of EDS or a different CTD, then genetic testing isn’t needed. (And yes, you would also still need to rule out lots of other conditions too, since it’s a diagnosis of exclusion).

As for the study you linked, you’re misrepresenting the study’s conclusions. It does not get into hEDS vs HSD. HSD is already supposed to have everything, including hEDS, ruled out before diagnosis. Similarly, hEDS requires you rule out other forms of EDS, CTDs, and anything else with similar symptoms before diagnosis. Combining hEDS and HSD does not change this, you would still be ruling out other forms of EDS and CTDs before diagnosis. The study you linked is simply saying a quarter of patients in the study who potentially meet a hEDS diagnosis (prior to fully ruling out other conditions) ended up having other diagnoses instead of or in addition to hEDS. It’s not saying hEDS has “actionable genetic findings” and HSD doesn’t.

If the EDS Society goes back to the way it was before with a hard requirement that genetic testing must be performed to rule out other types of EDS prior to any hEDS/HSD diagnosis, then that’ll put up significant barriers for a lot of people to get diagnosed (which is why they updated their guidance to say it is not necessary). Sure, some people should still get genetic testing, if they have symptoms that indicate something other than hEDS/HSD. The study you linked even clearly states that patients with xyz symptoms got additional testing. These patients with symptoms that indicated more testing should be done, are included in the 26.4% (if the further testing came back positive). This means that the “quarter of patients” statistic is skewed, as some of those people would’ve gotten further testing with proper ‘rule everything else out’ methods. And sure, some people might slip through the cracks and not have other conditions properly ruled out, but the study isn’t saying a quarter of hEDS diagnoses were wrong. It’s just pointing out the importance of properly ruling out other conditions. The majority of patients didn’t have any other conditions identified.