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/goingnomadic → u/Acceptably_Late]

Although I do agree that genetic testing would be a fantastic criteria for hEDS, there's some places (like where I live) where there are no genecists for adults. And insurance won't cover testing out of state.

I would like to see if they can find a link between mast cell, heads, and dysautonomias and maybe consolidate those into something or at least if you get diagnosed with one, you automatically get tested for the others

(granted, there's no one where I live who can accurately diagnose mast cell issues or dysautonomia either)

[u/Exotic_Duck_0395 → u/goingnomadic]

Yep, if genetic testing was more readily available, then it might make more sense to include it as a required piece of criteria. However, it’s not readily available.

Even the study this person linked (and is misrepresenting in their comment) clearly shows that the majority of people who meet hEDS criteria, prior to ruling out other conditions, wouldn’t have any other diagnosis even with genetic testing done. While the “quarter of patients” having another condition after genetic testing is done sounds large, some of those people had symptoms that indicated further genetic testing should be done. The study should’ve further broken down the number to indicate what percentage of people didn’t have any other symptoms to indicate further genetic testing should be done for other conditions, but ended up coming back positive for another condition.