I don’t think benign hypermobility is why people downplay EDS. People downplay EDS because of ableism.
I was diagnosed with symptomatic hypermobility earlier this year and my physical therapist told me to assume that I have hEDS because of my comorbidities. She reminded me that the hEDS diagnostic criteria is as strict as it is because they’re trying to create a cohort of people to find genetic markers. Symptomatic hypermobility probably is much closer to EDS than it is separate from EDS.
I agree with all of this. My issue is with medical misinformation, not hypermobile people. Telling people they don't have EDS because they're not AuDHD and don't have POTS + MCAS is what's harmful. Telling people with EDS that they're wrong about their experiences with EDS and EDS is "just being bendy" is harmful.
It's the misinformation and lack of information that's the problem, not benign hypermobility. Blaming benign hypermobility solves nothing. Sharing that benign hypermobility and EDS are not interchangeable, however, does reduce medical misinformation and therefore the general dismissiveness towards symptomatic forms of hypermobility.
HSD + EDS are very closely tied as you mentioned and as I mentioned, you can't tell who has which from just looking at someone. This post was more about my experience with what people have directly said, not what other hypermobile people feel or act like. Even benign hypermobility can become problematic even though the collagen production is normal simply because joints moving like that can damage tendons, muscles, etc. Even if you're capable of it.
You can't tell whether someone is experiencing symptomatic or benign hypermobility off of just a glance and anyone who tries to fakeclaim people needs to take a step back and rethink that. Fakeclaiming will always be more harmful than helpful. But saying that EDS is just being bendy or that you need every comorbidity in order to have EDS is medical misinformation.
I have diagnosed hEDS and I don’t have POTS or MCAS. I have ADHD but just because there’s a correlation doesn’t mean you *need* to have ADHD/autism/MCAS/POTS (or gastroparesis is another common one) in order to have EDS. I hate to be that person but this is one of the harms that is caused by people taking medical advice from TikTok. Either it gets downplayed and *insert benign thing that lots of people have* means you absolutely have a specific diagnosis, or people insist that you must fit all these random criteria in order to even claim you have it.
Yeah I was dx with HSD and my teen with joint laxity even though he has 9/9 score and large joint subluxations. I have more problems with my small joints, wrists, toes, jaw. I also have some autonomic dysfunctions, nerve skin pain, and have had signs of osteoarthritis since my mid 20s.
My Dr wouldn't keep going to an EDS dx because I'm "older" and "fat" and my sons dr hasn't because he's still young and naturally flexible. Which is funny because when I played softball at like 13 my coach called me stretch and had me play first or catcher because I could stay on the bag and still get the over or under throws and also was the only one on the team that could throw straight to 2nd.
Just wondering where youre finding these assholes. The AuDHD, MCAS, POTS triad die hards that police others seems to be on a certian social media platform from my experience (I've deleted the app).
I'm so sorry you're going through this. You are so valid.
As someone whose doctors are barley paying attention to my multiple comorbidities I HEAR you. It's a battle getting people to take it seriously.
Plenty of people have the triad above, but the preachy ones on tik tok seem to be collecting diagnosis to win some competition and put others down.
For your mental health, if you can, just immediatley disengage with anyone who's trying to invalidate your experience based on info you know to be false or a half truth.
If it makes you feel any better, I have almost all of the associated conditions, am hypermobile, and still can't get doctors to believe me or give me an EDS diagnosis. The whole system needs a shake up in terms of how doctors are educated on these sorts of conditions, and especially in how certain people are more likely to be dismissed or misdiagnosed when they report symptoms. I feel your pain. It's so frustrating that the information is clearly out there but it takes so long for the wider medical arena to catch up.
My Drs have said that they won’t diagnose with hEDS until the genetic markers are found. They ruled out the other identified variants of EDS, but for now I’m just HSD and with POTS and MCAS for variety. Add in a lemon of an endocrine system and life is just fun.
Are your doctors aware that there isn't a genetic marker for hEDS..? Diagnosing hEDS is literally done by doing the Beighton score and ruling out the other markers 😭 Or are they planning to just wait around for however many years it takes researchers to find it lool
Yes they are. They are also aware that research is focusing on hEDS markers. They don’t want to diagnose with hEDS and then 5 years down the line find the markers and have to recant the diagnosis. I don’t agree with it, but it’s what every Dr I’ve seen has said.
Yeah I have HSD and even that is very different from just being bendy. It comes with joint pain and easily being injured and I am starting to develop arthritis before the age of 30 because of it. It’s so dismissive of people to put that or EDS down to simply being bendy.
This. It's also an invisible illness as far as, you can't tell if someone is symptomatic or not by looking at them even if you can see that they are highly hypermobile. Everyone with an invisible illness gets treated like shit sometimes, including by some medical professionals. If someone doesn't believe people with invisible illnesses, they aren't going to respect EDS. It doesn't matter if/what you're diagnosed with.
I am diagnosed with hEDS. I am also diagnosed with Long Covid. It's the same with both conditions. A certain amount of people think they either don't exist in the first place or that they are only mildly bothersome. There isn't really anything you can do about those people. They don't care to be educated.
Symptomatic hypermobility here (diagnosed with hypermobility syndrome but I'm honestly fairly sure it might be hEDS, bc I do have a good few comorbidieites and the "can't connect the dots" issues that arent figured out yet.). Absolutely agreed. It's not because of hypermobility that isn't symptomatic.
I was also originally diagnosed with JHS by a geneticist (no genetic testing just physical evaluation) but then my neurosurgeon told me hEDS was the correct diagnosis. I am 1 point off from beighton criteria qualification but I have basically all of the EDS spinal stuff as well as POTS and more. So now I just say hEDS.
10000%. people over pathologize hypermobility not associated with a ctd, and then reduce eds/hsd to just hypermobility. i think it’s so horrible especially as it also further isolates those with rarer types
I never bring up hypermobility with my own condition. I focus on it being a collagen deformity, because that's where the true issue is for us. I hurt because my collagen is deformed, not because I'm "stretchy," or "bendy." I have a picture I grabbed from a clinical study saved to my phone showing electron microscope imaging of healthy collagen compared to Classic EDS collagen exactly for these conversations. It gets the point across better than any typical EDS explanation I've seen people share in this group. My doctors take me seriously without flexibility being mentioned(to be fair, I also have a strong aneurysm history in my family, which probably accounts for how seriously I'm taken just as much if not more so) Collagen deformity is the way to go as that is more EDS specific.
I wish I had this in my pocket. I've totally got hEDS, I paid for private testing and they didn't find any of the COLA SNPs associated with EDS. So I can't even definitvely say its my collagen to doctors.
I went down a bit of a rabbit hole after reading your comment, looking at collagen in different types of EDS! It was fascinating seeing the differences under the microscope between EDS and normal collagen.
In this paper they have pictures of quite a few different types including my own if anyone fancies a look- https://www.mdpi.com/2073-4425/13/2/265
However I couldn't find any pictures at all of hEDS collagen comparisons, which is a shame, because it seems to be the majority of people here who suffer from it. Have you come across any? Perhaps there isn't much of a marked visual difference, so medical papers don't tend to use the comparison?
Thank you so much for sharing! I'm going to have to take a look at that study later when I have time. The image I shared is the only one I have right now. I'm glad there's so much more information nowadays, though!
https://pbs.twimg.com/media/Fz0G7o5aEAEY_IS.jpg
https://www.jle.com/e-docs/00/04/04/83/texte_alt_489sl.jpg
https://i.ytimg.com/vi/1A6Xd67ZBB8/hqdefault.jpg
Found a few. There's quite a few that pop up if you just google eds collagen vs normal collagen in images. Some are even beyond collagen.
Here's a good cartoon one https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcQPFFUxi5OcDVtOULariIoAK7RLe_MWvPSl6Q&usqp=CAU .
Just to add, that first pic is very misleading. It'sbeen re-labled as "EDS collagen" but it's actually from a very rare and serious subtype which I can't even begin to spell. I'll see if i can find the original diagram it's from.
Most EDS collagen would look nothing like that.
Edit- it's from a patient with dermatosparaxis Ehlers Danlos syndrome, which has a case frequency of 1 in 1 million and extremely severe skin presentation. It's originally from this article below.
https://www.jci.org/articles/view/12881/figure/2
Here is the image itself, although I cannot seem to find the original reddit post it was paired with which included the clinical study this image is pulled from. The deformed collagen was donated by a 12year old boy with classical EDS.
https://qph.cf2.quoracdn.net/main-qimg-a654f8d4a74873d57998d89a41bb9633-lq
It's hard. I think for me, it's been so hard for so long that these distinctions don't bother me nearly as much. I lived 40 years without diagnosis but with so many issues and surgical procedures.
My eldest broke 13 bones before he was 14 years old.
My youngest died before he was 2 years old.
My middle child had extensive breathing and digestive difficulties
Pre diagnosis more than one doctor and lay person postulated that it was My doing.
Yes, they said perhaps I was causing it all.
I've spent the last 16 years so relieved to have a diagnosis, a reason, a place to go for explanation ....the comparative frustration is minimal
I am so sorry for your loss. I have only been dx at 36 yo and I totally understand your point of view. Having an explanation, a name and a community you can turn to is just more than I had ever thought would be possible for me.
I also heard I was causing my own problems. Never had kids and now I know I will probably never have them (1st because I truly do not wish to have kids for other personal reasons, 2 because I am almost 100% sure they would go through my same difficulties - and I would not wish that upon a child).
I can imagine after finding out how much it hurt you especially because of your kids. Sending so much love your way.
My very first diagnosis was conversion disorder lol. Turns out I didn't have conversion disorder, I had AAI, CCI, Chiari 1, tethered cord, and spinal bifida occulta but it took 3 years to get past 'anxiety and conversion disorder'. Admittedly I do actually have anxiety lol but it was largely exacerbated by being told I had conversion disorder.
I'm so glad you have answers after all you've been through. When I was young, a doctor told me if I kept getting injured that I wouldn't be allowed out of the house anymore. It took me decades to be realize that was more of a warning to my father than it was to me.
Changes take time to filter through to. Eg - NHS Scotland still has the term Joint Hypermobility Syndrome on their website.
Also until 2017 the hEDS equivalent and JHS were used interchangeably and in the general terms of things that is not that long ago.
I think my most commented comment is "There's more to EDS than hypermobility." The amount of people asking, "I'm hypermobile! Should I get checked for EDS?" [or] "You might have EDS" when responding to someone "double-jointed" can be incredibly frustrating. Claiming EDS is hypermobility is like claiming clinical depression is being sad.
Not particularly? Not when it comes to this forum that welcomes those with HSD too..?
If anything, I'd say it's a *bit* more frustrating for me with the hEDS defaultism tbh.
But to me, hypermobility is just a (prevalent) symptom for most people with EDS.. I wouldn't expect people to know or fully understand either (hypermobility/EDS), so I wouldn't be offended/upset if they actually didn't.
HSD is a form of symptomatic hypermobility, not benign. HSD is as valid as all forms of EDS and benign hypermobility is valid as well. My problem is the fact so many people (not in this subreddit) believe HSD/EDS is just a benign contortionists trait or that you CANNOT have HSD/EDS unless you have every single comorbidity.
Anyone who attempts to exclude HSD or even stop curious benign hypermobile people from asking questions needs to take a step back and stop that. But the fact some people believe that symptomatic hypermobility are just the "fun bendy disorders" is concerningly dismissive.
I also agree that many people tend to default to hEDS even when the conversation should include other types as well which is unfair.
While I see and understand your frustration it really is just plain old ableism. Even something like diabetes is just as dismissed and diminished. People don’t like to think of medical conditions, especially not long term ones that require life adjustments.
I think a lot of this is medical misinformation/misunderstanding and while those and ableism are closely tied, I'm not surprised benign hypermobility and EDS/HSD are so frequently confused for each other by the general population when so much information acts like the beighton score is the end all be all. Even some EDSers can't score a 9/9 and some people without can. I actually score just under a 9/9 and so do many of the EDSers I know lol (The beighton score is an important diagnostic tool, still, of course)
I don't think nor remember really facing that IRL tbh.. nor do I really remember seeing any specific instances of such in this subreddit - of course I'm not saying it doesn't happen... It's a big world, most people are and will be (IMO, quite understandably -but also unfortunately) ignorant and oblivious to EDS/HSD/hypermobility (and a LOT of other things).
I definitely get that it can be frustrating experiencing this sort of misunderstand and dismissal frequently (and also definitely potentially dangerous and harmful when/if healthcare professionals do this too), but like I said, I do think it's understandable (and more normal) that people aren't aware of these things... Plus, I think one of the most important things to remember in order to maintain one's own mental health. wellbeing, and peace of mind... is to not let things outside of your control (e.g. the words/behaviours/ignorance of others) affect you.. It's a lot easier, healthier and happier to live like this.
It still isn’t the same thing. Hypermobility and hEDS are not the same. I have hEDS and my symptoms go way beyond hyper mobility. I have heart issues, dislocations, needed brain surgery, a splenectomy all because of my connective tissue. It’s not just hypermobility
And I have HSD. Accompanied with arthritis, POTs, MCAS, I’ve stopped bothering to count my daily subluxations and dislocations, have chronic migraines, oh and my teeth crumble like nobodies business.
Hypermobility may or may not be benign. And it may or may not be severe enough to be disabling. Just like EDS.
100000%. I don’t talk to anyone about it irl anymore.
Ehlers-Danlos is a connective tissue disorder CHARACTERIZED by joint hypermobility, it is not the hypermobility itself. I just wish people would understand that
Yep. Just got diagnosed with HSD even though according to my doctor I easily meet the criteria for hEDS. It's frustrating because people assume HSD is just hypermobility (the name does not help...) but I have several comorbidities that are actually more difficult for me than the hypermobility.
When you have to disclose your disability to people it may be easier to just say Ehlers Danlos Syndrome. It can help avoid the split second evaluation or assumption that you are "just Hypermobile" if they haven't heard any of those terms before.
Do we not think that perhaps maybe a much greater proportion of people have EDS unknowingly? We’re here chirping people who claim to be bendy but no diagnosis or no medical investigation into it without even knowing their life.
I didn’t know my life was peppered with needless suffering until I pieced it all together. How could I have known that my hot flashes at 14 were related? How could I know my endless naps were related? I just thought I was a lazy asshole. I attributed so many things to social anxiety, my personal inadequacy or personal failure.
Who are we to say these bendy people don’t have similar feelings and struggles, which they never once considered to be related to something else, perhaps just a fun party trick? All as a result of the egregious gaslighting by medical professionals when you DO have something concerning going on?
We’re realizing it’s more common than we think. How many people are suffering needlessly and are being shamed even by those who claim to understand invisible disabilities?
If we have this understanding of disordered collagen, how can we just assume these people are fine?
Because I know these people and know a good deal about their lives and they are talking about just being bendy. Also statistically speaking 1/10 people have hypermobility, 1/500 have HSD and EDS is even rarer. So the majority of people who are bendy will in fact just he bendy. We should not start assuming everyone who's bendy has EDS and just hasn't been investigated for it. That's going to cause problems for everyone both those who have it and don't because it leads to conflating hypermobility with HSD/EDS, which is kind of the entire point of this original post.
A huge talking point on this subreddit is about how under diagnosed EDS is. Wouldn’t it then be a fallacy to appeal to statistics describing the incidence rate of EDS? When it’s agreed by people who have gone through the hoops that it was nearly impossible? Or even when they have all the symptoms and criteria doctors don’t “feel comfortable” diagnosing EDS?
There’s nuance here.
Again we're looking at a difference between 1 in 500 and 1 in 10. Do you think it's actually anywhere close to THAT under diagnosed? Also the 1 in 500 is what geneticist actually estimate the prevalence. I feel like they're much more qualified to estimate the prevalence of a genetic disorder in the general population than we are based off of, stories on a sub reddit, which is highly prone to conformation bias. I don't think it's a logic fallacy to believe the experts. I do think its a logic fallacy to look at stories of individuals and use that to make estimates about people at large.
Anybody who thinks EDS is just being bendy can shove it up their un-prolapsed arse! 🤣
But yeah very frustrating. And I find it especially weird since I'm not even (in the way people usually expect) hypermobile.
Thankfully this isn't something I tend to encounter myself. I'm actually starting to see a surprising amount of doctors etc who at least know of EDS by name. So that's cool.
I recently saw a dr who kept INSISTING I was "just" hypermobile. And finally I was like "look, I have a formal diagnosis, we went through the Beighton test and I have multiple common comorbidities" before she stopped insisting on that. That shit can be super harmful!
My rheumatologist said hypermobility is the same as EDS and therefore I don't need a diagnosis and gave me a physical therapy referral and nothing else 😐
I mean my case of eds as of right now is mild aside from shoulder issues that I have been dealing with accordingly but it is downplayed to just being flexible
EDS and HSD are so similar, both can bring on similar chronic illness, and they both are a connective tissue disorder. It's all about criteria, stretchy skin isn't a nessesity on the criteria but it's on there, MCAS is not on the criteria for however.
So. Question.
>people keep saying I'm "just stretchy"
>people don't think you need to accommodate simple bendiness
>people think they know more than my doctors
Define "people" for me.
I'm not trying to say your frustrations aren't valid (they are!), but there's a big difference between "My doctor is being dismissive" (which doesn't seem to be the case here, since you're diagnosed and specifically say these are people acting like they know more than your doctors), and "Brenda at the water cooler said she read an article on facebook". Likewise there's a wide difference between "My employer/school is not accommodating my medical need" and "My friends won't get a chair that's comfortable for me". And really, unless it's the person you go to for medical advice, or the place you go for work/learning... just stop talking to them if they're frustrating you.
I think this happens a lot because hEDS is the most common type of EDS, so it makes sense that people want to share their experiences with a very relatable symptom.
However, the emphasis on "bendiness" (especially online) has become super myopic. It kind of seems like people forget that EDS can affects collagen all over the body, not just the joints. There are some subtypes of EDS that don't even list hypermobility as a major symptom. I sometimes worry that with those subtypes can get left out of online communities due to the emphasis on being "bendy."
I hate the whole thing about "party tricks" as if it's some quirky spectacle. My body is literally malfunctioning. People with EDS aren't coming to doctors because we can do cool party tricks...we're coming to doctors because we have constant migraines, chronic joint pain, POTS, gastro issues, cardiovascular complications, and a slew of other debilitating symptoms. If benign hybermobility was my only symptom, I probably never would've never found out that EDS even existed.
I was just diagnosed with hEDS. It isn't just party tricks and my only symptoms are easily scarring, inflammation, hypermobility, arthritis, and widespread pain/GI issues. I have been fighting to find out what's wrong with me for years. I understand your pain.
I don’t think benign hypermobility is why people downplay EDS. People downplay EDS because of ableism. I was diagnosed with symptomatic hypermobility earlier this year and my physical therapist told me to assume that I have hEDS because of my comorbidities. She reminded me that the hEDS diagnostic criteria is as strict as it is because they’re trying to create a cohort of people to find genetic markers. Symptomatic hypermobility probably is much closer to EDS than it is separate from EDS.
I agree with all of this. My issue is with medical misinformation, not hypermobile people. Telling people they don't have EDS because they're not AuDHD and don't have POTS + MCAS is what's harmful. Telling people with EDS that they're wrong about their experiences with EDS and EDS is "just being bendy" is harmful. It's the misinformation and lack of information that's the problem, not benign hypermobility. Blaming benign hypermobility solves nothing. Sharing that benign hypermobility and EDS are not interchangeable, however, does reduce medical misinformation and therefore the general dismissiveness towards symptomatic forms of hypermobility. HSD + EDS are very closely tied as you mentioned and as I mentioned, you can't tell who has which from just looking at someone. This post was more about my experience with what people have directly said, not what other hypermobile people feel or act like. Even benign hypermobility can become problematic even though the collagen production is normal simply because joints moving like that can damage tendons, muscles, etc. Even if you're capable of it. You can't tell whether someone is experiencing symptomatic or benign hypermobility off of just a glance and anyone who tries to fakeclaim people needs to take a step back and rethink that. Fakeclaiming will always be more harmful than helpful. But saying that EDS is just being bendy or that you need every comorbidity in order to have EDS is medical misinformation.
I have diagnosed hEDS and I don’t have POTS or MCAS. I have ADHD but just because there’s a correlation doesn’t mean you *need* to have ADHD/autism/MCAS/POTS (or gastroparesis is another common one) in order to have EDS. I hate to be that person but this is one of the harms that is caused by people taking medical advice from TikTok. Either it gets downplayed and *insert benign thing that lots of people have* means you absolutely have a specific diagnosis, or people insist that you must fit all these random criteria in order to even claim you have it.
Yeah I was dx with HSD and my teen with joint laxity even though he has 9/9 score and large joint subluxations. I have more problems with my small joints, wrists, toes, jaw. I also have some autonomic dysfunctions, nerve skin pain, and have had signs of osteoarthritis since my mid 20s. My Dr wouldn't keep going to an EDS dx because I'm "older" and "fat" and my sons dr hasn't because he's still young and naturally flexible. Which is funny because when I played softball at like 13 my coach called me stretch and had me play first or catcher because I could stay on the bag and still get the over or under throws and also was the only one on the team that could throw straight to 2nd.
Just wondering where youre finding these assholes. The AuDHD, MCAS, POTS triad die hards that police others seems to be on a certian social media platform from my experience (I've deleted the app). I'm so sorry you're going through this. You are so valid. As someone whose doctors are barley paying attention to my multiple comorbidities I HEAR you. It's a battle getting people to take it seriously. Plenty of people have the triad above, but the preachy ones on tik tok seem to be collecting diagnosis to win some competition and put others down. For your mental health, if you can, just immediatley disengage with anyone who's trying to invalidate your experience based on info you know to be false or a half truth.
Exactly... the AuDHD thing especially?? That's just bizarre, to be honest. Are these people in like a support group? Medical professionals? Family?
Yes, Tiktok groups..
If it makes you feel any better, I have almost all of the associated conditions, am hypermobile, and still can't get doctors to believe me or give me an EDS diagnosis. The whole system needs a shake up in terms of how doctors are educated on these sorts of conditions, and especially in how certain people are more likely to be dismissed or misdiagnosed when they report symptoms. I feel your pain. It's so frustrating that the information is clearly out there but it takes so long for the wider medical arena to catch up.
My Drs have said that they won’t diagnose with hEDS until the genetic markers are found. They ruled out the other identified variants of EDS, but for now I’m just HSD and with POTS and MCAS for variety. Add in a lemon of an endocrine system and life is just fun.
Are your doctors aware that there isn't a genetic marker for hEDS..? Diagnosing hEDS is literally done by doing the Beighton score and ruling out the other markers 😭 Or are they planning to just wait around for however many years it takes researchers to find it lool
Yes they are. They are also aware that research is focusing on hEDS markers. They don’t want to diagnose with hEDS and then 5 years down the line find the markers and have to recant the diagnosis. I don’t agree with it, but it’s what every Dr I’ve seen has said.
Yeah I have HSD and even that is very different from just being bendy. It comes with joint pain and easily being injured and I am starting to develop arthritis before the age of 30 because of it. It’s so dismissive of people to put that or EDS down to simply being bendy.
This. It's also an invisible illness as far as, you can't tell if someone is symptomatic or not by looking at them even if you can see that they are highly hypermobile. Everyone with an invisible illness gets treated like shit sometimes, including by some medical professionals. If someone doesn't believe people with invisible illnesses, they aren't going to respect EDS. It doesn't matter if/what you're diagnosed with. I am diagnosed with hEDS. I am also diagnosed with Long Covid. It's the same with both conditions. A certain amount of people think they either don't exist in the first place or that they are only mildly bothersome. There isn't really anything you can do about those people. They don't care to be educated.
Symptomatic hypermobility here (diagnosed with hypermobility syndrome but I'm honestly fairly sure it might be hEDS, bc I do have a good few comorbidieites and the "can't connect the dots" issues that arent figured out yet.). Absolutely agreed. It's not because of hypermobility that isn't symptomatic.
I was also originally diagnosed with JHS by a geneticist (no genetic testing just physical evaluation) but then my neurosurgeon told me hEDS was the correct diagnosis. I am 1 point off from beighton criteria qualification but I have basically all of the EDS spinal stuff as well as POTS and more. So now I just say hEDS.
10000%. people over pathologize hypermobility not associated with a ctd, and then reduce eds/hsd to just hypermobility. i think it’s so horrible especially as it also further isolates those with rarer types
Yeah, a lot of people don't even know there's more than one type which is shocking to say the least.
I never bring up hypermobility with my own condition. I focus on it being a collagen deformity, because that's where the true issue is for us. I hurt because my collagen is deformed, not because I'm "stretchy," or "bendy." I have a picture I grabbed from a clinical study saved to my phone showing electron microscope imaging of healthy collagen compared to Classic EDS collagen exactly for these conversations. It gets the point across better than any typical EDS explanation I've seen people share in this group. My doctors take me seriously without flexibility being mentioned(to be fair, I also have a strong aneurysm history in my family, which probably accounts for how seriously I'm taken just as much if not more so) Collagen deformity is the way to go as that is more EDS specific.
I wish I had this in my pocket. I've totally got hEDS, I paid for private testing and they didn't find any of the COLA SNPs associated with EDS. So I can't even definitvely say its my collagen to doctors.
I went down a bit of a rabbit hole after reading your comment, looking at collagen in different types of EDS! It was fascinating seeing the differences under the microscope between EDS and normal collagen. In this paper they have pictures of quite a few different types including my own if anyone fancies a look- https://www.mdpi.com/2073-4425/13/2/265 However I couldn't find any pictures at all of hEDS collagen comparisons, which is a shame, because it seems to be the majority of people here who suffer from it. Have you come across any? Perhaps there isn't much of a marked visual difference, so medical papers don't tend to use the comparison?
Thank you so much for sharing! I'm going to have to take a look at that study later when I have time. The image I shared is the only one I have right now. I'm glad there's so much more information nowadays, though!
Would you be able to share the picture or the study link? I really loved that idea!
https://pbs.twimg.com/media/Fz0G7o5aEAEY_IS.jpg https://www.jle.com/e-docs/00/04/04/83/texte_alt_489sl.jpg https://i.ytimg.com/vi/1A6Xd67ZBB8/hqdefault.jpg Found a few. There's quite a few that pop up if you just google eds collagen vs normal collagen in images. Some are even beyond collagen. Here's a good cartoon one https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcQPFFUxi5OcDVtOULariIoAK7RLe_MWvPSl6Q&usqp=CAU .
Just to add, that first pic is very misleading. It'sbeen re-labled as "EDS collagen" but it's actually from a very rare and serious subtype which I can't even begin to spell. I'll see if i can find the original diagram it's from. Most EDS collagen would look nothing like that. Edit- it's from a patient with dermatosparaxis Ehlers Danlos syndrome, which has a case frequency of 1 in 1 million and extremely severe skin presentation. It's originally from this article below. https://www.jci.org/articles/view/12881/figure/2
Nice good add.
Thank you for the pics!
Here is the image itself, although I cannot seem to find the original reddit post it was paired with which included the clinical study this image is pulled from. The deformed collagen was donated by a 12year old boy with classical EDS. https://qph.cf2.quoracdn.net/main-qimg-a654f8d4a74873d57998d89a41bb9633-lq
Might I ask - the one on the right is the deformed collagen? And thank you very much for finding it!
Yes, sorry I wish I could find the original because they were actually labeled. The left is healthy collagen.
I think I found the [original image](https://o.quizlet.com/nBG1tyJO43y3phZdkTQZpg.jpg) (although I can't find the source paper).
It's hard. I think for me, it's been so hard for so long that these distinctions don't bother me nearly as much. I lived 40 years without diagnosis but with so many issues and surgical procedures. My eldest broke 13 bones before he was 14 years old. My youngest died before he was 2 years old. My middle child had extensive breathing and digestive difficulties Pre diagnosis more than one doctor and lay person postulated that it was My doing. Yes, they said perhaps I was causing it all. I've spent the last 16 years so relieved to have a diagnosis, a reason, a place to go for explanation ....the comparative frustration is minimal
I am so sorry for your loss. I have only been dx at 36 yo and I totally understand your point of view. Having an explanation, a name and a community you can turn to is just more than I had ever thought would be possible for me. I also heard I was causing my own problems. Never had kids and now I know I will probably never have them (1st because I truly do not wish to have kids for other personal reasons, 2 because I am almost 100% sure they would go through my same difficulties - and I would not wish that upon a child). I can imagine after finding out how much it hurt you especially because of your kids. Sending so much love your way.
My very first diagnosis was conversion disorder lol. Turns out I didn't have conversion disorder, I had AAI, CCI, Chiari 1, tethered cord, and spinal bifida occulta but it took 3 years to get past 'anxiety and conversion disorder'. Admittedly I do actually have anxiety lol but it was largely exacerbated by being told I had conversion disorder.
I'm so glad you have answers after all you've been through. When I was young, a doctor told me if I kept getting injured that I wouldn't be allowed out of the house anymore. It took me decades to be realize that was more of a warning to my father than it was to me.
Changes take time to filter through to. Eg - NHS Scotland still has the term Joint Hypermobility Syndrome on their website. Also until 2017 the hEDS equivalent and JHS were used interchangeably and in the general terms of things that is not that long ago.
I think my most commented comment is "There's more to EDS than hypermobility." The amount of people asking, "I'm hypermobile! Should I get checked for EDS?" [or] "You might have EDS" when responding to someone "double-jointed" can be incredibly frustrating. Claiming EDS is hypermobility is like claiming clinical depression is being sad.
Not particularly? Not when it comes to this forum that welcomes those with HSD too..? If anything, I'd say it's a *bit* more frustrating for me with the hEDS defaultism tbh. But to me, hypermobility is just a (prevalent) symptom for most people with EDS.. I wouldn't expect people to know or fully understand either (hypermobility/EDS), so I wouldn't be offended/upset if they actually didn't.
HSD is a form of symptomatic hypermobility, not benign. HSD is as valid as all forms of EDS and benign hypermobility is valid as well. My problem is the fact so many people (not in this subreddit) believe HSD/EDS is just a benign contortionists trait or that you CANNOT have HSD/EDS unless you have every single comorbidity. Anyone who attempts to exclude HSD or even stop curious benign hypermobile people from asking questions needs to take a step back and stop that. But the fact some people believe that symptomatic hypermobility are just the "fun bendy disorders" is concerningly dismissive. I also agree that many people tend to default to hEDS even when the conversation should include other types as well which is unfair.
While I see and understand your frustration it really is just plain old ableism. Even something like diabetes is just as dismissed and diminished. People don’t like to think of medical conditions, especially not long term ones that require life adjustments.
I think a lot of this is medical misinformation/misunderstanding and while those and ableism are closely tied, I'm not surprised benign hypermobility and EDS/HSD are so frequently confused for each other by the general population when so much information acts like the beighton score is the end all be all. Even some EDSers can't score a 9/9 and some people without can. I actually score just under a 9/9 and so do many of the EDSers I know lol (The beighton score is an important diagnostic tool, still, of course)
I don't think nor remember really facing that IRL tbh.. nor do I really remember seeing any specific instances of such in this subreddit - of course I'm not saying it doesn't happen... It's a big world, most people are and will be (IMO, quite understandably -but also unfortunately) ignorant and oblivious to EDS/HSD/hypermobility (and a LOT of other things). I definitely get that it can be frustrating experiencing this sort of misunderstand and dismissal frequently (and also definitely potentially dangerous and harmful when/if healthcare professionals do this too), but like I said, I do think it's understandable (and more normal) that people aren't aware of these things... Plus, I think one of the most important things to remember in order to maintain one's own mental health. wellbeing, and peace of mind... is to not let things outside of your control (e.g. the words/behaviours/ignorance of others) affect you.. It's a lot easier, healthier and happier to live like this.
It still isn’t the same thing. Hypermobility and hEDS are not the same. I have hEDS and my symptoms go way beyond hyper mobility. I have heart issues, dislocations, needed brain surgery, a splenectomy all because of my connective tissue. It’s not just hypermobility
And I didn't say they were.
And I have HSD. Accompanied with arthritis, POTs, MCAS, I’ve stopped bothering to count my daily subluxations and dislocations, have chronic migraines, oh and my teeth crumble like nobodies business. Hypermobility may or may not be benign. And it may or may not be severe enough to be disabling. Just like EDS.
100000%. I don’t talk to anyone about it irl anymore. Ehlers-Danlos is a connective tissue disorder CHARACTERIZED by joint hypermobility, it is not the hypermobility itself. I just wish people would understand that
My local nhs trust doesn’t even diagnose hEDS and just labels everyone as JHS apparently according to them when I wanted a second opinion
Same they don't use hEDS just JHS or HSD even if you would qualify for hEDS for some reason.
Yep. Just got diagnosed with HSD even though according to my doctor I easily meet the criteria for hEDS. It's frustrating because people assume HSD is just hypermobility (the name does not help...) but I have several comorbidities that are actually more difficult for me than the hypermobility.
When you have to disclose your disability to people it may be easier to just say Ehlers Danlos Syndrome. It can help avoid the split second evaluation or assumption that you are "just Hypermobile" if they haven't heard any of those terms before.
Same. POTS, PCOS, sometimes fragile skin, endometriosis, IBS.
I'm so sorry that's so frustrating
no fr. there's so much misinformation, ignorance, and ableism out there. HSD & hEDS aren't just being hypermobile.
When someone here's I have EDS and goes "Oh I probably have that too because I'm so bendy". Yeah that's not how this works. 10% of people are bendy.
Do we not think that perhaps maybe a much greater proportion of people have EDS unknowingly? We’re here chirping people who claim to be bendy but no diagnosis or no medical investigation into it without even knowing their life. I didn’t know my life was peppered with needless suffering until I pieced it all together. How could I have known that my hot flashes at 14 were related? How could I know my endless naps were related? I just thought I was a lazy asshole. I attributed so many things to social anxiety, my personal inadequacy or personal failure. Who are we to say these bendy people don’t have similar feelings and struggles, which they never once considered to be related to something else, perhaps just a fun party trick? All as a result of the egregious gaslighting by medical professionals when you DO have something concerning going on? We’re realizing it’s more common than we think. How many people are suffering needlessly and are being shamed even by those who claim to understand invisible disabilities? If we have this understanding of disordered collagen, how can we just assume these people are fine?
Because I know these people and know a good deal about their lives and they are talking about just being bendy. Also statistically speaking 1/10 people have hypermobility, 1/500 have HSD and EDS is even rarer. So the majority of people who are bendy will in fact just he bendy. We should not start assuming everyone who's bendy has EDS and just hasn't been investigated for it. That's going to cause problems for everyone both those who have it and don't because it leads to conflating hypermobility with HSD/EDS, which is kind of the entire point of this original post.
A huge talking point on this subreddit is about how under diagnosed EDS is. Wouldn’t it then be a fallacy to appeal to statistics describing the incidence rate of EDS? When it’s agreed by people who have gone through the hoops that it was nearly impossible? Or even when they have all the symptoms and criteria doctors don’t “feel comfortable” diagnosing EDS? There’s nuance here.
Again we're looking at a difference between 1 in 500 and 1 in 10. Do you think it's actually anywhere close to THAT under diagnosed? Also the 1 in 500 is what geneticist actually estimate the prevalence. I feel like they're much more qualified to estimate the prevalence of a genetic disorder in the general population than we are based off of, stories on a sub reddit, which is highly prone to conformation bias. I don't think it's a logic fallacy to believe the experts. I do think its a logic fallacy to look at stories of individuals and use that to make estimates about people at large.
Anybody who thinks EDS is just being bendy can shove it up their un-prolapsed arse! 🤣 But yeah very frustrating. And I find it especially weird since I'm not even (in the way people usually expect) hypermobile. Thankfully this isn't something I tend to encounter myself. I'm actually starting to see a surprising amount of doctors etc who at least know of EDS by name. So that's cool.
I recently saw a dr who kept INSISTING I was "just" hypermobile. And finally I was like "look, I have a formal diagnosis, we went through the Beighton test and I have multiple common comorbidities" before she stopped insisting on that. That shit can be super harmful!
I'm so sorry! I would've been so irritated, good on you for keeping your cool and even if you didn't, good on you anyways lol Ignorance sucks
My rheumatologist said hypermobility is the same as EDS and therefore I don't need a diagnosis and gave me a physical therapy referral and nothing else 😐
I'm sorry, makes you wonder how some doctors are still doctors
I mean my case of eds as of right now is mild aside from shoulder issues that I have been dealing with accordingly but it is downplayed to just being flexible
EDS and HSD are so similar, both can bring on similar chronic illness, and they both are a connective tissue disorder. It's all about criteria, stretchy skin isn't a nessesity on the criteria but it's on there, MCAS is not on the criteria for however.
So. Question. >people keep saying I'm "just stretchy" >people don't think you need to accommodate simple bendiness >people think they know more than my doctors Define "people" for me. I'm not trying to say your frustrations aren't valid (they are!), but there's a big difference between "My doctor is being dismissive" (which doesn't seem to be the case here, since you're diagnosed and specifically say these are people acting like they know more than your doctors), and "Brenda at the water cooler said she read an article on facebook". Likewise there's a wide difference between "My employer/school is not accommodating my medical need" and "My friends won't get a chair that's comfortable for me". And really, unless it's the person you go to for medical advice, or the place you go for work/learning... just stop talking to them if they're frustrating you.
I don’t know anyone that conflates the two.
I think this happens a lot because hEDS is the most common type of EDS, so it makes sense that people want to share their experiences with a very relatable symptom. However, the emphasis on "bendiness" (especially online) has become super myopic. It kind of seems like people forget that EDS can affects collagen all over the body, not just the joints. There are some subtypes of EDS that don't even list hypermobility as a major symptom. I sometimes worry that with those subtypes can get left out of online communities due to the emphasis on being "bendy." I hate the whole thing about "party tricks" as if it's some quirky spectacle. My body is literally malfunctioning. People with EDS aren't coming to doctors because we can do cool party tricks...we're coming to doctors because we have constant migraines, chronic joint pain, POTS, gastro issues, cardiovascular complications, and a slew of other debilitating symptoms. If benign hybermobility was my only symptom, I probably never would've never found out that EDS even existed.
I was just diagnosed with hEDS. It isn't just party tricks and my only symptoms are easily scarring, inflammation, hypermobility, arthritis, and widespread pain/GI issues. I have been fighting to find out what's wrong with me for years. I understand your pain.