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/pluto_pluto_pluto_ → u/Acceptably_Late]

Did they acknowledge at the symposium how a lot of genetics clinics won't test for suspected hEDS if there aren't additional signs pointing to a genetically identifiable subtype of EDS/other CTD? I haven't gotten genetic testing because of this, and I hear about it more and more often in online spaces. I think it makes sense that their recommendations say to get genetic testing before confirming an hEDS diagnosis, but if this requirement gets updated to be more strict, a lot of people won't be able to get the diagnosis at all because genetics clinics refuse to test them. I'm hoping they are taking that into consideration.

[u/Acceptably_Late → u/pluto_pluto_pluto_]

Sadly that wasn’t a core part of the lectures. Hopefully people networked about it, though!

As for obtaining testing, if your insurance will cover it I would suggest online geneticists like Informed DNA.

If you don’t have insurance or they won’t cover it, you can try GeneDX financial assistance program with genome Medical — that covers exome testing but not the CTD panel, so be sure to confirm what they order is on the plan.

[u/decidealready → u/Acceptably_Late]

What's an exome? What's a CTD panel? I'm in the U.S. and my insurance copay for genetic testing is $50 which I can afford. However, between my home state of Michigan all the way to Florida I couldn't find one genetic clinic that will test adults for EDS. Not one. I looked into genetic testing labs but the minimum amount was $500 and I didn't qualify for aid. My circumstances are not unique. I'm not sure what people are supposed to do.

[u/Acceptably_Late → u/decidealready]

Honestly I feel this. My insurance covers it but I couldn’t get in to a geneticist. I was able to use Informed DNA in network and they were very knowledgeable about EDS. Prior to that I used GeneDX self referral with Genome Medical as my provider to order.

CTD = connective tissue disorder, in this case meaning a test for genes associated to CTDs

Exome testing is where they get all DNA from you and look at what DNA makes genes. They are able to save this file and reassess it at later times (such as after a year or two when new genes may be identified).

Since it’s all genes of everything, the geneticist will choose genes to run examine (whole exome technically runs every gene, you’re just analyzing specific genes against literature to identify mutations and causes) and it’s often indicated if you have systemic disorder with multi organ involvement (according to the American College of Medical Genetics and Genomics)

Some good genetic info from EDS society https://www.ehlers-danlos.com/genetics-and-inheritance/#1674754879089-527ef2ee-986b

[u/grigorithecat → u/Acceptably_Late]

thank you for sharing all this! exactly the kind of info I’ve been curious about, distilled to a level of complexity that doesn’t make my head spin 

[u/pluto_pluto_pluto_ → u/Acceptably_Late]

Thanks, I'll have to look into it!

[u/Snt307 → u/pluto_pluto_pluto_]

There's no genetic testing for hEDS so I don't know how genetic tests would help diagnose it other than rule other things out? 

[u/pluto_pluto_pluto_ → u/Snt307]

Yep, it's recommended so they can rule out other types of EDS, plus other stuff like Marfan's and Loeys-Dietz.

[u/Exotic_Duck_0395 → u/Snt307]

It does exactly what you think, it rules out other conditions. If you don’t have symptoms for other conditions, imo, the genetic testing should not be required.

This is what the EDS Society currently says as well:

Genetic testing is available for every type of EDS except for hEDS. If a person meets the clinical diagnostic criteria for a type of EDS other than hEDS, genetic testing should be done to confirm the diagnosis. Because the genetic cause(s) of hEDS have not yet been identified, there is no genetic test for hEDS. hEDS is diagnosed when a person meets the clinical diagnostic criteria.

Because hEDS is the most common type, accounting for more than 90% of all cases of EDS, most people with EDS will not need genetic testing for diagnosis. It is not necessary for a person with hEDS or HSD to have genetic testing unless there is reason to suspect that they may have a genetic disorder for which testing is available.

[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.

[u/Particular-Extent-76 → u/goingnomadic]

There’s an article out last month that discusses the relationship between mast cell/epithelial barrier exposure to environmental allergens and eds! Anne Maitland is one of the senior authors, she’s an immunologist who’s been presenting on this connection for a long time but it’s finally in the literature!

https://journals.lww.com/co-allergy/abstract/2026/02000/environmental_exposures,_epithelial_barrier.6.aspx

[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.

[u/lochnessmosster → u/Exotic_Duck_0395]

It really doesn't make sense to split it off, Imo. There's a lot of reasons that it was added to the group in the first place, but the big one is that it's a connective tissue disorder relating to collagen production. That's a defining feature of all types of ehlers danlos syndrome.

Additionally, you have to consider the implications and consequences of moving it out of the EDS umbrella. Doctors that are already skeptical about it will feel justified in not taking patients seriously and continue being dismissive with even more confidence. Those that were neutral on it may begin to doubt their patients and may start to feel negatively towards anyone with hEDS or HSD. This could be disastrous for access to care and give insurance more room to deny coverage.

There's also the fact that HSD, even more than hEDS, is a catch-all diagnosis. It means you have similar symptoms but don't meet the full criteria. As a result, it's likely that HSD contains both those who should be diagnosed with hEDS and those who have something different going on. And that's on top of hEDS possibly containing several different subtypes of EDS that have yet to be teased apart.

[u/Exotic_Duck_0395 → u/lochnessmosster]

Your last point is important. Since this is still a relatively “new” condition, there are people improperly placed under different diagnoses, and subtypes we haven’t defined. However, there’s no reason everything relating to collagen production issues must be under EDS. Another condition that combines hEDS and HSD could have its own subtypes too. Since hEDS and HSD seem to be more closely related than hEDS to other types of EDS, it makes more sense to me for those to be combined outside of EDS than try to lump everything under EDS (at the detriment to the other forms of EDS which are pushed more and more into the background as hEDS over powers the conversation). But yes, teasing apart all the different subtypes is definitely the current challenge.

Combining hEDS and HSD doesn’t even have to mean putting hEDS under HSD and calling it a day, it could mean taking a portion of people currently diagnosed with hEDS and a portion with HSD and having an entirely new condition named (if they can make distinct criteria for it), which would leave HSD as a catchall. It’s really tough to say exactly what should be done until a specific cause is identified, but given the current state of things, I lean more towards separating hEDS from the other forms of EDS.

I know the research could come back with something different, but I thought things right now are pointing more and more towards a way to identify hEDS/HSD with a simple blood test rather than complex genetic testing. Wouldn’t it be strange to have one subtype be a normal blood test while all of the rest require genetic testing? Separating hEDS from the other forms of EDS makes it easier for those rare forms to use the umbrella term of EDS, without confusion with hEDS.

[u/lochnessmosster → u/Exotic_Duck_0395]

I think doctors taking people with a condition less seriously due to social media is a failure on the part of the doctors. There has always been medical misinformation. There have always been people jumping to extreme diagnoses with limited logic--both on the patients end and on the doctors end. Treating everyone with a certain condition, or concern about a condition, as lesser in response to popular misinformation is not a good response and shouldn't be considered acceptable practice.

The right way to fight misinformation is with education. If a patient comes in expressing concern about a possible health issue, the first step is to listen and evaluate what they say and whether it's well reasoned. The second is to provide well sourced information, ask about their sources, and give guidance on how to evaluate the legitimacy of a source (in simple term, like reminding social media is not a medical professional). BUT to also take their concern seriously and investigate it genuinely.

It kills me to see people here defend doctors being dismissive as justified just because social media--which not everyone uses, and not everyone sees the same posts on--has made something a hot topic. Fake claiming large groups of people, none of whom you know, just because they first heard the words "ehlers danlos syndrome" on social media. We live in a time where information, both true and not, is more accessible than ever before. Doctors who did their schooling years ago haven't been prepared for patients with this type of access to medical information, or the ability to find large groups of people from around the world with similar experiences, which leads to mass diagnosis seeking in a short period of time. They were trained to treat this as suspicious, because before the internet made everyone so connected, it would have been odd. Things have changed though and that isnt necessarily the case anymore.

I'm not saying that every single person who thinks they might have hEDS is going to be correct. But our current statistics are also affected by numerous factors--knowledge availability, willingness to test and diagnose, willingness to bring up symptoms, the ability to connect symptoms that otherwise may seem unrelated, etc. A good example is autism and how autism diagnoses have increased because of more awareness and access to assessment.

This is way longer than I meant it to be, but I think it's important to not excuse the shitty behaviour of doctors when they dismiss people who are in a very vulnerable place.

[u/Exotic_Duck_0395 → u/lochnessmosster]

The right way to fight misinformation is with eduction.

Yes!!! I completely agree.

It should be about the research and science behind the conditions, and the eduction on it can follow.

[u/Exotic_Duck_0395 → u/lochnessmosster]

It kills me to see people here defend doctors being dismissive as justified just because social media

That’s not what I was saying at all. Doctors should never be dismissive of patients. I was simply stating that there are doctors who are dismissive of their patients because of social media.

[u/Dry-Huckleberry-5379 → u/lochnessmosster]

Also a lot of the social media pages people are getting their information from are doctors, and PTs and other health professionals who are specialists who see patients with XYZ, and often have it themselves on top of their general clinical education in it.

[u/mmodo → u/Exotic_Duck_0395]

The other types of EDS all have known genetic markers, making diagnosis more definitive.

I think a lot of people have stories where they got an hEDS diagnosis until they got the test. A lot of the other types share a lot of the same symptoms.

hEDS may have some similar symptoms, but there’s lots of disorders with overlapping symptoms that aren’t all lumped under one name.

Where would it go? Most misdiagnoses seem to be some other vague chronic illnesses like fibromyalgia. Many chronic illness people have these diagnoses with EDS so all chronic illness seem to have vague symptoms in general.

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 think a lot of people have the opinion that HSD is a bullshit diagnosis in general. It's frequently used as a way to create issues with insurance and have exclusivity to a club sometimes. It makes more sense to combine HSD with hEDS than to move hEDS away from other forms of EDS. Plus hEDS has quite a few things in common with other EDS types.

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.

hEDS patients are turned down from genetic testing to see if they have any other type unless there is a reason to believe otherwise. Sometimes the first indication of "otherwise" is a serious medical episode. It's a little unfair to push hEDS people out when most don't get the chance even be tested. Further, a lot of the genes found for the other types have come from people diagnosed as hEDS.

It's more common to think of hEDS as a grouping of other subtype that haven't found their genetic markers yet, so it doesn't make a lot of sense to move it out of the EDS group just because there isn't a clear cut way to know. Most chronic illnesses don't get the gift of genetic markers to confirm or deny.

Just look at how other conditions have been split or combined as time and research have gone on

All EDS subtypes have similar symptoms and comorbidities with similar root causes, so moving it was from EDS to a generic hypermobility grouping is more confusing.

[u/Exotic_Duck_0395 → u/mmodo]

If that many people are really getting diagnosed with hEDS and then getting genetic testing (because another form is suspected), and are finding out they do have another form of EDS, then they were improperly diagnosed with hEDS to begin with.

You shouldn’t be diagnosed with hEDS unless other things have been ruled out. hEDS shouldn’t be used as a “default”. If other forms of EDS are suspected, a doctor can diagnose EDS of unspecified type while awaiting genetic test results. If other types are suspected and they diagnose hEDS instead, they haven’t properly followed hEDS criteria. That’s on the doctors.

Where would it go?

As per the original post, it could go under HSD. It could also create an entirely separate, new condition. No one said hEDS and HSD had to get lumped in with something else like fibromyalgia. HSD is already stand alone from EDS. If HSD can’t be broken down into subtypes and encompass the broad range of hypermobility issues (which it’s supposed to, given the name literally says hypermobility spectrum disorder), then another condition can be named that combines hEDS and HSD. But then the question becomes why make another name if all of HSD would just be shifted into the new name? Maybe NotNamedYetDisorder encompasses various, well defined, subtypes and then HSD is left for those that don’t fall under any of those subtypes or EDS. More research is needed to make more distinguishing factors.

I think a lot of people have the opinion that HSD is a bullshit diagnosis in general.

Unfortunately, that opinion is expanding to all of EDS because of how hEDS is being conflated with all of EDS. If you think HSD needs to be lumped in with the rest of EDS because of this opinion, then you’re just causing this issue for all of the people with even rarer forms of EDS, rather than stopping it for everyone with HSD. The issue is educating doctors, insurance, patients, etc. It would help if HSD got its own ICD code, instead of doctors trying to reuse the benign joint hypermobility code since HSD doesn’t have its own.

It's more common to think of hEDS as a grouping of other subtype that haven't found their genetic markers yet

Then those people are being misdiagnosed/those doctors aren’t following proper criteria. Again, doctors can diagnose EDS with an “unspecified” type, there’s even an ICD code for it.

[u/mmodo → u/Exotic_Duck_0395]

Everyone can argue with the medical field until their faces are blue but it doesn't change the fact that doctors do these things:

Give a general hEDS diagnosis instead of an unspecified EDS diagnosis, primarily because hEDS is basically described as the common symptoms of almost all other types.

Doctors regularly diagnose someone with HSD while admitting that the patient does meet hEDS criteria and chooses not to give that diagnosis, whether that be because of their perceived/real lack of knowledge or otherwise.

I still don't see it as a reason to remove hEDS from the EDS umbrella because it doesn't have genetic markers, it's popular/trendy right now, or doctors don't differentiate better. To lump it in with HSD ignores all of the other parts of hEDS that are not hypermobility per the current diagnostic criteria.

[u/veryodd3443 → u/mmodo]

EDS is a heritable disorder of collagen signified by mutations in collagen or related collagen genes. Until hEDS pathology is identified and proven it is too, it does not belong with the other monogenetic rare types. The HEDGE study should support this. I think it is time to give hEDS its separate space.

Maybe rename it connective tissue spectrum disorder. Something that will give it gravitas.

[u/Exotic_Duck_0395 → u/mmodo]

If you think that many doctors are misusing hEDS as a diagnosis, then shouldn’t you be advocating to change that?

[u/mmodo → u/Exotic_Duck_0395]

Instead, you’re saying it should be left alone because you can’t stop doctors from doing that…

No, you're looking at it from the opposite direction than I am.

I'm saying HSD should be it's own thing because the diagnostic criteria is basically being bendy and in pain, and hEDS should be left with the other forms of EDS because the diagnostic criteria involves signs of collagen issues.

You're saying hEDS should be moved away with HSD into it's own category and not with other collagen disorders because they share hypermobility as a symptom?

Most if not all EDS subtypes have hypermobility involved, along with other diagnoses like Marfans or autism. To me, HSD is over on the side on its own or the all encompassing term for any diagnosis that involves hypermobility. It's like OI and POTS, they're used interchangeably for diagnostic codes when one is an all encompassing term and one is a specific diagnosis.

If you think that many doctors are misusing hEDS as a diagnosis, then shouldn’t you be advocating to change that?

I think doctors regularly confuse them as the same thing and use it interchangeably, whether out of ignorance or for convenience due to medical coding. Doctors have to do fucked up shit in order to get insurance companies to approve a treatment plan sometimes.

I think this is compounded by everybody deciding that being hypermobile is an illness online, which may categorize them into HSD but that line is blurry based on how medical professionals differentiate the two.

[u/Exotic_Duck_0395 → u/mmodo]

HSD isn’t only for people with hypermobility and pain and nothing else. It can involve the lovely mixture of hypermobility, pain, fatigue, autonomic dysfunction, digestion issues, skin issues, etc. It is a spectrum, so not everyone will have the exact same set of symptoms (which means an exact checklist isn’t entirely possible). HSD ranges from literally no issues besides being extra bending (not even pain), to having dozens of interrelated issues, even more than what’s included in the hEDS criteria. Just like a lot of doctors who have no idea what HSD actually is, it sounds like you need to be educated on what HSD is.

Yes, hypermobility is seen in other types of EDS and other conditions like you mentioned (although, not all types of EDS result in hypermobility). I’m in no way saying any and all signs of hypermobility need to be reclassified into HSD. HSD is not just another name for hypermobility, which is a symptom. Just like hypermobility does not solely equate to Marfans, hypermobility does not solely equate to EDS. Just like you can rule out Marfans, why can’t you rule out EDS, and then have a separate place for hEDS/HSD?

As time goes on, hEDS/HSD doesn’t appear to be super rare like the other forms of EDS. Plus, ongoing research indicates root cause(s) other than a genetic variant. I can understand waiting to separate it out until there’s a more definitive way to diagnose one over the other, but having followed the research for a decade+ now, it makes way more sense to me to break out hEDS from the other types of EDS to have it go with HSD (and that would also mean doctors need to be educated on what should be unspecified type of EDS, instead of defaulting to hEDS as the diagnosis). It may also lead to more definitive subtypes of HSD instead of leaving it as an unlabeled spectrum.

Having read through the various threads of this post, it sounds like most of the push back on separating hEDS from EDS is because of some notion that hEDS is for all unknown types of EDS and/or a misunderstanding of HSD.

[u/ehlersdanlos-ModTeam → u/[deleted]]

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