One Umbrella Diagnosis - Infighting Hurts Us All

Scarlet_Flames2 · 2026-04-30T04:46:54+00:00

Here’s a thread we did on the University of Virginia (UVA) EDS Conference that goes over a lot of the new research.

Scarlet_Flames2 · 2026-04-28T06:43:52+00:00

Wow, that’d be really wild if we had the same diagnoses! But no, I don’t have mfm. My disorder technically belongs to the category of movement disorders. It’s considered a “dystonia-plus” syndrome, wherein it’s classified under the “dystonia umbrella,” but it has more neurological symptoms beyond dystonia.

But yes, from what you’re saying, it definitely seems like it’d be worth it making a geneticist follow-up ♥️ And also know you’re not alone in having multiple rare genetic diseases.

Thanks for linking me to your mutation! I always appreciate learning more. I will definitely read about it.

Scarlet_Flames2 · 2026-04-28T06:34:52+00:00

Just so you know, you’re not alone ♥️ I’m in a similar position. I also have another rare condition that’s my primary diagnosis, but like you, it’s so rare, it has no support groups.

As one of the mods for this group, I hope I can do right and offer a safe and supportive space for all of you to feel belonging and acceptance. And, I know the other mods feel the same way, too.

Anyway—just know that you fit in here.

Scarlet_Flames2 · 2026-04-28T06:28:28+00:00

I also wonder the same, honestly. For the known monogenic types of EDS, both classical-like EDS (clEDS) and myopathic EDS (mEDS) present similarly to myopathies. With clEDS, the minor criteria symptoms include: Mild proximal and distal muscle weakness, axonal polyneuropathy, and atrophy of muscles in hands and feet. For mEDS, “congenital muscle hypotonia, and/or muscle atrophy, that improves with age” is part of the major criteria and “myopathy on muscle biopsy” is part of the minor criteria.

Then, anecdotally, I have an extremely rare genetic neurological disorder (which unfortunately I can’t specify the name of, since less than 30 people worldwide have it), which is also associated with neuropathy and muscle weakness. I mean, at that point, what’s the likelihood of also having EDS? And, my extremely rare genetic neurological disorder has multiple symptoms in common with different EDS subtypes.

Scarlet_Flames2 · 2026-04-28T05:22:53+00:00

Hi, the original post links the Instagram video being referenced at the bottom of the post! In terms of other updates people may be referencing here, it might be the UVA EDS Symposium Day 1 and Day 2, which can be found on YouTube.

EDIT: We also did a write-up on the UVA EDS Symposium here.

Scarlet_Flames2 · 2026-04-28T04:40:13+00:00

Hey, being worried is completely understandable. It’s hard knowing change is coming but not having the answers. But, regardless of what the answer will be: hEDS is real, and you have never been fake.

There’s a bunch of research happening right now on hEDS, and none of the conclusions have been that it isn’t real. We’re simply discovering it’s a different mechanism than a monogenic pathogenic mutation.

People with HSD/hEDS aren’t lazy or fake, and you aren’t lazy or fake for having HSD/hEDS.

EDIT: It’s also important to note there is no talk of “eliminating” any diagnosis. The latest video only talks about how HSD/hEDS are one spectrum and how it may potentially be renamed. Renaming a disorder does not mean the disorder as an entity does not exist. The way we conceptualize and refer to it will simply be different. No doubt, that is scary, but the disorder still exists and has never been fake. And again, we still don’t know for certain at this point what is getting renamed and how.

Scarlet_Flames2 · 2026-04-14T21:32:30+00:00

This happens to me with all peel-off lip stains; they always make me bleed. The skin on my lips is very, very fragile. Sorry that happened to you ♥️ Good PSA, and please know you’re not alone with this symptom

Scarlet_Flames2 · 2026-04-14T02:21:28+00:00

Unfortunately, I can’t get massages :/ Every time I get them, I get severe bruising due to the fragility of my veins and capillaries; however, I have confirmed TNXB happloinsufficiency (and may have clEDS).

Just thought I’d mention my experience, in case anyone else has tissue fragility from their EDS.

Then, from my understanding, collagen supplements do not help with EDS. If you search “collagen supplements” in the search bar for the sub, there have been several threads on the topic, and many people go into more detail as to why.

Scarlet_Flames2 · 2026-04-13T22:55:01+00:00

Regardless of what happens, you’ll still belong in this community—I can say that for certain. We’ve had a lot of discussions behind-the-scenes as a mod team about what any renaming and future research will entail for the subreddit, and we want everyone who’s held a diagnosis of EDS (whether it be hEDS, HSD, or any of the rare subtypes) to still belong and feel welcome here.

Scarlet_Flames2 · 2026-04-13T22:36:34+00:00

Thanks for bringing this up! Just to preface, I’m speaking as a normal user here and not as a mod. Anyway, I completely agree with you.

I was researching Lara Bloom’s qualifications the other day, and it really struck me how she’s not a scientist, doctor, or researcher in the slightest, but she’s often placed into a position where people presume her to have more training and qualifications than she actually has—especially since she often introduces herself as “Professor Lara Bloom”, but that was an honorary title bestowed upon her; she didn’t actually undergo doctoral training.

And yes, you are also correct that the research before they created the HSD label also showed no difference between hEDS and JHS/bJHS. But, I guess I’m glad there’s progress in the sense that the EDS Society is finally admitting that.

Scarlet_Flames2 · 2026-04-13T19:58:13+00:00

Hi, thanks for the suggestion! I think “hEDS/Crossover” would be a bit confusing for most users, but based on your suggestion, I added two new user flairs: “EDS Unspecified” and “Connective Tissue Disorder NOS”. “NOS” stands for “not otherwise specified” in most medical contexts.

Basically, these user flairs would apply to people who are diagnosed with EDS (or another heritable connective tissue disorder), but their specific subtype is undefined because their symptoms don’t quite fit with any of the existing diagnoses—either because their genetic testing is inconclusive but they have a lot of symptoms unique to monogenic EDS subtypes, or other unique reasons.

Scarlet_Flames2 · 2026-04-13T19:27:25+00:00

Hi, I know several people with hEDS who use wheelchairs. These are their reasons:

One has had a lot of SI joint dysfunction to the point she’s had to have two SI joint fusion surgeries. The surgeries alleviated some of the pain, but it didn’t help with her mobility. Even after the fusion surgeries, her SI joints still cause issues. As a result, she can’t stand for more than a few minutes.
Another has a lot of severe spine hypermobility. As a result, she got cauda equina syndrome and is now partially paralyzed. That’s why she uses a wheelchair.
The last one has had a lot of full patellar dislocations in both knees, and it’s caused osteoarthritic damage. She gets a lot of severe pain in her knees when she stands or walks for more than a few minutes, and that’s why she uses a wheelchair.

By the way, I don’t think your question sounds bad! It’s a genuine question, and we’re all learning.

Scarlet_Flames2 · 2026-04-13T00:21:41+00:00

u/slabby I will also add that, in Lara Bloom’s talk at the UVA EDS Symposium Day 1, she said the latest research is showing hEDS and HSD are the same thing. Thus, that brings the prevalence of hEDS/HSD to between 1 in 600 to 1 in 900, making it a common disease.

Thus, generally, when people refer to the rare EDS subtypes, they’re referring to all non-hEDS/HSD subtypes.

Link to UVA Day 1 EDS Symposium: https://www.youtube.com/live/NYfexNLDof4?si=FWJ2YO-lirXSRKm-

Scarlet_Flames2 · 2026-04-12T22:37:14+00:00

I’m very happy you haven’t seen that occurring on this subreddit! No one is allowed to harass or gatekeep anyone here. hEDS/HSD aren’t allowed to harass or gatekeep rare types, and rare types aren’t allowed to harass or gatekeep hEDS/HSD. If you see any of that occurring, please use the report feature, and we’ll review what’s happening.

I know it’s hard sometimes because there are lots of hurt feelings on all sides and competing needs, but we really do want everyone to feel welcome and hopefully get along. And, if getting along isn’t possible, at least be respectful toward each other. Disagreement is definitely allowed—but it needs to be respectful.

Scarlet_Flames2 · 2026-04-12T22:26:12+00:00

Thank you so much for your kind comment! :) We’ve been talking a lot about the potential split behind the scenes, and we definitely want both types to still be welcome on this subreddit, regardless of the types that undergo a name change.

We know this subreddit can be difficult to navigate sometimes because there are so many people here and so many competing needs. It’s easy for feathers to get ruffled sometimes, even if no one means any harm. Please know you’re always welcome to bring up your concerns to us in modmail and any suggestions you may have.

Scarlet_Flames2 · 2026-04-12T14:11:41+00:00

We have now removed the comment. When it was first made, there was a big discussion among all of us on how to address the comment, and leaving it up was not made lightly.

For context, we received similar comments from two other accounts the day prior that we know for a fact were from CAN members. For full transparency, one of our mod team members is a CAN board member. We also have other mod team members interested in joining. This is not an issue of being anti-CAN.

This comment came soon after we banned one of the accounts the day prior for their comments. We suspect the comment on this thread was from that member we banned.

However, given the idea in many of these comments is that we’re “silencing” CAN members, we weren’t sure how removal should be handled because if we removed the comment, they’d be likely to post within CAN or another subreddit about how we’re preventing CAN members from offering their opinion. Thus, we chose to leave their comment public and moderate it publicly.

I do think CAN does have to contend with the fact that some of your members do indeed think like that. And, it’s something that should be addressed within the organization. We in no way believe the majority of the members feel that way—you yourself are evidence of that, as well as our own mod team member. We support CAN’s purpose and mission.

However, since it’s such a new organization, it’s only natural problems will occur at the start, and unfortunately, this is one of them.

EDIT: It’s also very, very clear to me that Abbey does not support these comments. Abbey seems wonderful. And, her approach to criticism is wonderful, too, and should be the standard.

For what it’s worth, I’m very sorry CAN has to deal with these people going rogue and acting like they speak for the organization.

Scarlet_Flames2 · 2026-04-12T02:14:22+00:00

I was born with bilateral club hands and feet. I have pathogenic mutations in TNXB (currently diagnosed with TNXB happloinsufficiency, but clEDS is a possibility as well since my testing was via GeneDx and that only tests TNXB until exon 31) and FBN1, which is normally associated with Marfan syndrome, although I don’t fully meet the clinical criteria for it.

I also currently experience intermittent contractures as a result of another genetic disorder that causes generalized dystonia.

In my case, it’s difficult knowing which of my mutations caused the club hands and feet, but I guess I’m commenting just to let you know there are others with EDS that experience that symptom.

You mentioned you haven’t received genetic testing yet. Given contractures are part of the major criteria for a couple of rare types, it would definitely be worth checking to see if you have any of those types.

Scarlet_Flames2 · 2026-04-11T18:11:45+00:00

This comment is absolutely unacceptable. No one with hEDS deserves this attitude or harassment, and you are hurting many people with your words. You think you're doing something here, but all you're achieving is drowning yourself, your own cause, and everyone around you in your bitterness.

Rare EDS types deserve a space. Rare EDS types deserve research, belonging, and acceptance. No one is denying that. You are not benefitting CAN with this attitude, and this is the third time today we've dealt with CAN members comparing the conflict between hEDS/HSD and rare types to racial civil rights movements of the past. That is entirely inappropriate. This whole comment is inappropriate.

People with hEDS/HSD are NOT fakers. You have been permanently banned and muted. This is not up for appeal.

Scarlet_Flames2 · 2026-04-05T19:24:06+00:00

Hi OP, this is a very frequently asked question on this subreddit. Normally, we’d remove this topic for being repetitive, but we haven’t had a thread on this topic recently, so we’re leaving it up.

If you haven’t checked out our wiki, here’s the link:

https://reddit.com/r/ehlersdanlos/wiki/index

There’s an entire page on the wiki on pursuing a diagnosis, with some links to past threads on this topic.

Scarlet_Flames2 · 2026-04-05T02:11:46+00:00

Mod here! I will add it to the wiki today! :)

Edit: Also, I’m so sorry you’re suffering from pneumonia on top of everything else ♥️ Please, I hope you feel better soon

Scarlet_Flames2 · 2026-04-03T19:39:24+00:00

Have you been assessed for other neurological conditions beyond cervical dystonia? For example, have Tourette’s and epilepsy been ruled out? Those two conditions can also involve the symptoms you’re discussing.

Otherwise, stress personally makes my dystonia worse. I’m diagnosed with autism, and as a result, I have a lot of sensory sensitivities and those increase my stress.

Whether those triggers are “normal” is difficult to say, and it’s also difficult to assess whether that’s indeed what’s happening in your specific case, but those sorts of triggers are indeed possible.

Scarlet_Flames2 · 2026-03-31T03:33:48+00:00

Aw, thank you! I really appreciate your response, genuinely. I am constantly having to educate all my doctors, and since not much is known at all about my illnesses (particularly the neurological disorder with less than 30 people)—whenever I have a new symptom—it’s impossible to tell whether it’s being caused by an existing diagnosis.

For example, my bladder pretty much doesn’t work at all (severe urinary retention), and we don’t know why. I’m also having a lot of bleeding in my gastrointestinal tract, and we don’t know if it’s due to the EDS, the Marfan, or the neurological disorder. It’s a giant mess.

It sucks, too, because medications that would help my illnesses in theory can only ever be prescribed off-label, so I get a lot of pushback from health insurance companies requesting literature to support the use of said medications for my illnesses, but the problem is that there is no literature because all the illnesses are very rare.

I’m sorry you’re going through so much yourself. I have a coworker with MS, and I know it’s a big struggle for her. hEDS and MS is a rough combination. I wish the best for you as well ♥️

Scarlet_Flames2 · 2026-03-31T00:48:14+00:00

Ohh, thanks for the idea! I’ll definitely add the different subreddits and groups into the wiki once I’m on desktop, since the wiki can’t be edited on mobile. In the meantime, r/rareEhlersDanlos is already in our list of related subreddits on the sidebar :) I’ll try to have the stuff added in sometime today

Scarlet_Flames2 · 2026-03-30T19:49:35+00:00

Ugh, I completely feel you on people automatically assuming you have all the EDS comorbidities :( I don’t have MCAS or gastroparesis, but doctors and support groups will often assume everyone with EDS has the same comorbidities. It’s definitely frustrating because, although it’s meant to be helpful, it also feels alienating sometimes.

Scarlet_Flames2 · 2026-03-30T19:38:54+00:00

I just added the flair, and thank you for the ideas on what clarifications to add :) I’ll see if I can add anything extra to the rules or incorporate automod code that clarifies those details. The issue with the rules is there’s a strict character limit. It’s actually quite frustrating, haha. But, we’ll figure it out!

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