hEDS Diagnostic Criteria Explained

In this video, we dive deep together into the diagnostic criteria for hEDS. I explain in detail everything listed on the criteria checklist. You can find a copy of this checklist at www.Ehlers-Danlos.com. Let me know if you have any questions! How close can you get to passing the diagnostic criteria?

[@ehlersdanlosandi]

Can you pass the diagnostic criteria? What do you think should change to make the criteria better? Personally, I wouldn't mind seeing comorbidities added to feature A of criterion 2.

[@WooWoo-co4jf]

I totally agree about the comorbidities. The other part I've not got to get before my brain screamed write a comment lol

[@MsMesem]

For which country?!

[@ehlersdanlosandi]

@MsMesem the criteria isn't country specific. It's universal

[@angelseely]

I can pass it but I have a hard time with the Beighton scoring. What annoys me is that it doesn’t include feet at all. I can’t touch my thumb to my forearm but I can bend my middle toes back to touch the top of my foot. I feel like there should be a little leeway in testing which joints are lax or not. Also, there’s a question about whether you could ever do the splits, why isn’t still being able to do the splits well into adulthood part of the points system? 🤷‍♀️

[@ehlersdanlosandi]

@@angelseely I agree 100%! I think more joints need to be included.

[@AintNoFool]

At almost 70, I was just diagnosed. Years of chronic pain and most people thought it was all in my head. 😢

[@ehlersdanlosandi]

I'm glad you finally have a diagnosis.

[@LR-px9ms]

Sorry for your suffering and feeling invalidated

[@jennuwinlivin]

🫂

[@juliag1063]

Thank you for explaining this! I actually realized I had more signs than I thought I did. Thank you!

[@ehlersdanlosandi]

You are so welcome!!!

[@sherryobar5750]

Thank you for going through that diagnostic test! Made it much clearer.

[@ehlersdanlosandi]

You are so very welcome! I noticed the internet was lacking in quick easy info about hEDS, so I decided to make my own channel about it!

[@kyndramb7050]

I can pass the criteria, but don't have stretchy skin. I have had other health problems over the years, but EDS actually makes sense. I've always been hyper-mobile. I remember in elementary school we were doing the "Presidential Tests" during gym class, and i was the inly one who could reach past my toes. Just didn't realize being hypermobile was much an issue til much later, and I have had multiple times where my knees just go the wrong way, and when I would wear a knee brace, people told me I was wearing it wrong, but as it turns out, I was keeping my patella from popping out of place. My Mom and my maternal cousin both have superflexible hands/joints and am sure they could easily pass the Beighton scale. However, my mother is a nurse, and thinks that because we don't have stretchy skin that there is no possible way we have EDS in any capacity. We shall see. My old doctor retired suddenly without warning, and my new younger female doctor is actually taking me seriously.

[@ehlersdanlosandi]

Stretchy skin to a noticeable degree is actually usually only seen in Classical and Classical-like EDS (and maybe Dematosporaxis type I think). You can have mildly stretchy skin with Hypermobile EDS, but not everyone does. Personally, mine is maybe only slightly stretchier than the normal population, hardly noticeable at all.

[@joylox]

I used to be able to touch past my toes, probably because of my long fingers, but then I started having back and neck issues which I didn't realize at the time, and my joints would get stuck, so I lost the ability to touch my toes. I've been going to a manual therapist to get things moving again, and thankfully unpinched a nerve that was causing me pain for years (misdiagnosed as tendinitis, but it was the nerve from my neck to my hand being squished by a bone in my neck that slid over. I can't move my head too quickly or that happens). I still can't touch my toes, but at least I'm in less pain, even if I do have go to back almost every week because something else went out of place... I'm kind of glad I'm less flexible now, as I remember my dad getting after me for putting my foot behind my head because he was worried I'd get stuck. So I'd pretend my foot was a phone instead, and put it to my ear. That, I can still do, but chose not to. I find compression garments can keep things in place, I often use socks and gloves, but I'm not sure about my skin. My partner has softer skin, but he says mine is soft too. His family is also on the border of meeting the criteria, where they meet a decent chunk, but not enough. I know there are other things like Hypermobility Spectrum Disorders that may or may not be related to hEDS. They're usually grouped together when looking at treatment and comorbidities, so perhaps that's the route to go.

[@sarabethgrossmann4587]

I've been struggling for 20 years to figure out what was going on. I've been "dx" with so many other things bc they couldn't figure out what was going on. This checks all the boxes!

[@ehlersdanlosandi]

I hope you're finally on the right path to a proper diagnosis! It's such a relief to have an actual name for what's going on.

[@raw1427]

I live in a small town in Southern Oregon. My pain specialist ruled out EDS today after asking only whether my thumbs bent back to reach my wrist. No further criteria. Her comment was that there isn't any treatment for EDS anyway. My chiropractor noticed the extra-pliability of my tendons and joints. I have more than enough "points" by your explanation. Thank you so much. I've known for years that there's more going on than fibromyalgia. I don't care if there's no treatment. I just want to understand.

[@ehlersdanlosandi]

For some reason, the thumb to wrist trick has become the unofficial "sign" of EDS to a lot of doctors. It's too bad your specialist wasn't more knowledgeable. I hope you get some answers!

[@FrogsLikeFruitSnacks]

you are a life saver! ive been trying to figure out whats going on with my body and this has helped me understand hEDS alot more

[@ehlersdanlosandi]

I'm glad you found it helpful!

[@catherinesearle9596]

We all have EDS in my family, going back 4 generations, including myself and my 3 siblings. We also have varying degrees or combinations of POTS, dysautonomia, gastroparesis, and associated conditions. However we don't fit any of the current EDS types, so only one of my siblings has had a diagnosis. Our hypermobility is limited to certain joints (in my case, hips and ankles) that aren't picked up by the Beighton Score. I just don't tick enough of the boxes to get a diagnosis, even though its blatantly obvious that we have some form of EDS in our family.

[@ehlersdanlosandi]

I'm hoping that once more genes are found, it will help people like your family get diagnosed!

[@catherinesearle9596]

@@ehlersdanlosandi Thank you, its really nice to experience some empathy and understanding from someone who gets it!

[@charlottestandage2765]

I do hope you get a diagnosis soon. The Brighton scale is too ridgid. I just wondered what you mean by combinations of POTS and dysautonomia. Are they essentially the same or do you mean some of your family have things like low blood pressure etc. Thank you. I'm just interested to known as my family seem to have some differences in presentation.

[@catherinesearle9596]

@@charlottestandage2765 Thanks for the hope for a diagnosis! POTS and dysautonomia are not the same thing. Dysautonomia affects all the 'behind the scenes' regulatory functions including for example body temperature, breathing, heart rate, etc. We all have essentially the same suite of conditions but it expresses very differently.

[@kazooboo2431]

This is such a helpful video! Thank you!

[@ehlersdanlosandi]

You're so welcome!

[@cattails4422]

Great video! Thank you

[@ehlersdanlosandi]

You're welcome!

[@joylox]

If you count a hemorrhoid as a pelvic floor issue (which did go away with pelvic floor physio), then I meet it. I've been seeing a physio/manual therapist 1-4 times a month for over a year now as I've been on the wait list for a connective tissue specialist. Although oddly enough, my partner meets a lot of part 2A as well. I'm not sure if any of my family would count as my dad is hypermobile, as was his mom and her sister, but where hormones affect collagen, it seems to be that the men don't get it as bad, so that combined with the multiple years of waiting for diagnosis, means I don't qualify for the family history part. I do wish that co-occuring conditions were listed, as POTS, MCS, MCAS, food intolerances, etc. I'd definitely qualify if those were considered, although they may or may not have other causes. I just know that everyone in my family who is hypermobile (or says they're double jointed) is also sensitive to gluten, and some of us also have chemical sensitivity to things like scented candles/soaps/cleaners, perfumes, chlorinated water, and rashes from metals in addition to the rashes from gluten. We're all insecure about our elbows due to both rashes, and hyperextension... We used to show off weird stuff, like my dad and I popping our hips out of place (which I only realized in my 20s that it's called a subluxion, and it's not normal), or bending things backwards. I don't know how no one picked up on it, I'm sure someone who isn't blood related saw something.

[@deirdrehbrt]

I'm 62, and will meet with a rheumatologist in May, and I am having my DNA sequenced to learn if I do have EDS. I score 7 on the Beighton scale - which is a bit unusual at my age. I have had injuries throughout my life - rolling my ankles if I so much as stepped on a pebble. falls could mess up my shoulders for weeks, and until I started wearing wrist braces while sleeping, I'd wake in the morning with a hand under my pillow and my wrist bent over and it would be sore for days. Both hips dislocate at will, and I can stand with the soles of my feet flat against each other. And I meet the other criteria (though I do get cigarette paper scarring - so that might be interesting ...) So, I've definitely got the hypermobility. My Physical Therapist says that the only people she's seen with this level of hypermobility have had EDS - but that's not a diagnosis. In any case, my DNA results should be back in a month or two, and I'll go from there. At a minimum, it's good to know that when I was constantly getting injured when I was young, that it wasn't just because I was being careless or clumsy. And having a diagnosis will definitely help me make some decisions in the future regarding other possible surgeries.

[@ehlersdanlosandi]

Having a diagnosis will definitely help! It sure sounds like you've got EDS, and if not, definitely some type of connective tissue disorder!

[@amandamills6181]

I wish doctors would listen to physical therapists & chiropractors! I've been asked by a few whether I've been diagnosed with heds. They spend years learning about, & handling people's bodies. I can't think of a better person to spot hypermobility, soft skin, fragile skin, & joint problems.

[@deirdrehbrt]

@@ehlersdanlosandi so my sequencing shows at least a few mutations for classical like EDS. But apparently I need a geneticist to make the DX.

[@ehlersdanlosandi]

@deirdrehbrt that sounds about right, they will be able to interpret the results for you.

[@deirdrehbrt]

@@ehlersdanlosandi yeah. Just having the mutations, and knowing that my daughter's doctors are suggesting that she's got EDS - my life makes allot more sense now.

[@aliciahackett4945]

Thank you SO much. 💖🙏🏻

[@ehlersdanlosandi]

You're welcome! Pretty soon I'm going to film a "can my husband pass the diagnostic criteria" video. It should be a fun one, so watch for it if you're interested! 😊

[@amber-kelliwhittington-bra7495]

Me, my Mom and sister have got Heds But I don't just have Heds I also have Hip displacia and Autism aswell ❤

[@donna8916]

Thank you ❤ very helpful info.

[@ehlersdanlosandi]

You're very welcome!

[@EyeHeartThePanda]

I think i actually might have hEDS… my friend has been convinced for months but I’ve been hesitant to go that route. My doctors have historically dismissed my symptoms - since childhood. And the rheumatologist I saw weeks ago literally said “oh you’re hypermobile, that explains everything” I was like “what about HSD or hEDS” And she responded with a scoff and said, “no. You do not have that.” But she didn’t check anything, literally just had me move my joints and dismissed me 😅 Maybe I’m just in denial

[@ehlersdanlosandi]

If you think there's a chance, it's definitely worth getting an evaluation. I'm curious if those doctors who dismissed you had an explanation for why they think you don't have HSD or hEDS?

[@teresareinert8271]

I’ve had a rheumatologist say that she didn’t think I have it without doing much more than a quick brighten questions at 61 I can do all of them except the arms. I pass all of most on this questionnaire. The Dr wasn’t interested in it at all. I was there to see her about an eye problem my eye Dr thought might be because of arthritis. She said no to that. Isn’t there an eye issue with some heds sufferers?

[@ehlersdanlosandi]

@teresareinert8271 There certainly can be some eye problems with EDS, for sure that I know of there's an increased chance of retina tears and detachment as well as cornea issues.

[@stellamariss3335]

I’ve never considered a disorder like this before. And I was surprised by some of the symptoms or features because I was like “yeah… I do have that, but I never considered that they were related in a way. I’ve always been told my face is super soft and I as always liek okay lol. But I never use lotion. And my skin has really bad indent scars. Most I’ve done myself from picking but they never heal normal they heal as indents which I thought was just what happens. And my skin tears super easy never thought much of it either. And I already knew I was hyper mobile. But I never thought much about the pain thing until now. I have a bad shoulder that bothers me a lot snd has for years. It pops and cracks and is super hyper mobile. My knees also have been a problem for me as well as my hips and pelvis and I always contributed it to being weak. But my shoulder doesn’t make sense in that logic cause I played volleyball and other sports and my shoulder wasn’t weak. My hands are very squishy too😂

[@ehlersdanlosandi]

It's amazing all of the things that are affected!

[@olivialansom2357]

I got 7/9 on the beighton scale, 5 or 6/12 on criterion 2 a, none for b, and all 3 for c, and all 3 for criterion 3. I was planning on going to the doctors after learning that I fit the symptoms on the NHS website perfectly, but realising I hit so many of these has made me realise I definitely need to

[@ehlersdanlosandi]

It sounds like you really need to!

[@olivialansom2357]

@@ehlersdanlosandi had a good scroll to find this video again. Went to the doctors yesterday, the doctor told me I almost certainly have hEDS but won’t refer me anywhere to get diagnosed as it’s the ‘same treatment as hypermobility’ is this a common thing doctors say or should I find a different doctor so get the referral I need?

[@ehlersdanlosandi]

@olivialansom2357 I have definitely heard people say doctors won't diagnose or refer to someone else to diagnose because the treatment is the same as hypermobility, HSD, or because it has no cure. Personally, I think that choice to seek diagnosis should be left up to the patient. I have a video about why diagnosis is important, and I wish more doctors understood the importance of having a proper name for what's wrong with someone.

[@olivialansom2357]

@@ehlersdanlosandi I’ll have to have a look at that video, thank you

[@ko0974]

​@@olivialansom2357it is my experience in Ireland ..very reluctant to dx..say its JHS or HDS... or go to Dublin for the one specialist who only here 2 days a month ...or go to England .

[@katfoster845]

I meet way more of criteria 2 than I thought. Even without assessing my heart, I meet 8 of criteria A. It's definitely something I need to push for assessment for. I score 8/9 on the Beighton test, my knees are so hypermobile they bend like bananas. Definitely have widespread joint pain, definitely have unstable joints (I can pop my shoulders in and out of their sockets), I don't seem to meet the criteria for any other illness, so I think hEDS is the most likely explanation.

[@ehlersdanlosandi]

Definitely do push for assessment! Getting a diagnosis is so important!

[@giselemascarellisalgado2207]

Eu tenho síndrome de elhers danlos. Obrigada pelo vídeo explicando

[@ehlersdanlosandi]

De nada! Fico feliz que tenha gostado!

[@Jackofallzebras]

There is a genetic marker that has been found. It just hasn’t been published yet for the utilization of diagnostics.

[@ehlersdanlosandi]

I saw that! I'm excited to learn more about it and eventually get tested!

[@stonifae]

Thank you for helping me fill out the pdf file my drs do not listen to me whatsoever so hopefully now they will

[@ehlersdanlosandi]

You're welcome! I hope they do!

[@WooWoo-co4jf]

I've always been told my elbows are hypermobile too but I don't get it, the others I do. But elbows are I don't know, knees for example are easy to see and feel, elbows...too many bumpy bits for me too see. 2 weeks ago after not seeing a GO since spring 2020 and still only by phone my gp said he doesn't know anything about hypermobilty! I know each surgery was sent a package with the updated information to diagnose it themselves. The rheumatologist I refuse to see now had knowledge about 20 years out of date. No surprise from who trained her. 2 appointments a year apart she told me all about her 70± year old ballet teacher sister, who of course had acquired hyoermobility. Now I need to see another one for your as well. So I said I'll go to the next city to see one there instead. You never know they might have a clue. Oh, I have POTS, Dr who did the tilt table test said yes, you have pots, well as d an appointment...vivid so that didn't happen. A nurse practitioner looked at the results & said yes you have pots, go said I dont, I have something else. 5 years ago another gp said no I didn't have pots because it's rare! The nurse practitioner is on an almost expert level too. It's like banging my head into a wall!

[@ehlersdanlosandi]

It definitely seems like you've had a heck of an exhausting experience!

[@vducky7]

i have an 8 on the beighton scale, 8/12 for criterion 2A, 3/3 for criterion 2C, but nearly every scar on my body is a cigarette paper scar. the only place i get atrophic scars is on my face. weird

[@autumnalwillow]

Can you have hEDS without passing the beighton test? I have HSD and also meet the rest of the hEDS criteria but I only score 3/9 on the beighton scale because my other hypermobile joints aren’t included in that test

[@ehlersdanlosandi]

You can't be officially diagnosed with hEDS under the current diagnostic criteria because passing the beighton test is part of the criteria. I personally believe, however, that the beighton test has its limitations (doesn't test enough joints). I also believe that once the genetic variant/s are found that cause hEDS, that many people who previously couldn't get a hEDS diagnosis will be found to have the variant/s.

[@shannongreenwell1278]

I was able to pass enough of the test to satisfy my Neurologist but he took in consideration my age, and the fact that I’m not going to be as Hyper Mobile as I was as a teenager or child. He used the questionnaire on me. I have the Classical type. I have Atrophic scars on my skin. My Palate is high and I don’t remember if I had to have teeth pulled to make room for the other teeth, that would have been done as a child. I might have had them removed.

[@ehlersdanlosandi]

It will be nice once the gene mutations responsible for the hypermobile type are discovered. Then, we can just test genetically if we show signs and not stress so much over the diagnostic criteria.

[@shannongreenwell1278]

@@ehlersdanlosandi I have read what gene mutation causes Classical EDS, which also causes Osteogenesis Imperfecta and that’s what my mom and sister have as well as many other people in my family. The COL5A1 or COL5A2 gene. Mine is the COL5A2

[@ehlersdanlosandi]

@Shannon Greenwell I think genetics is so fascinating. It's amazing to me all the things that can go wrong, but beautiful and awe inspiring that it usually goes right.

[@amandamills6181]

What type of doctor would you suggest to get a diagnosis? Physical therapists have asked me multiple times about heds. I wish their opinions were held in a higher regard. Thanks for the informative video!

[@ehlersdanlosandi]

If possible, I highly recommend a geneticist, because they would be considered the experts on hEDS and could help rule out other connective tissue disorders through genetic testing. If not a geneticist, then a rheumatologist would be the second best option, in my opinion.

[@amandamills6181]

@@ehlersdanlosandi Thanks for such a quick & helpful response! Hope you're faring well!

[@ehlersdanlosandi]

@@amandamills6181 You're welcome! I've been doing great lately 😊

[@MusicJunkie37]

I have always been very skinny, like super skinny and I have abnormally stretchy skin I have arachnodactyly, have done genetic testing on Marfan syndrome and vascular EDS but it came back negative We also did a physical examination and the beighton scale for EDS and I was like one point short or barely qualified, but no diagnosis was set what can I do next?

[@MusicJunkie37]

I've also had digestion issues for years, had a gastroscopy, colonoscopy but they didn't show anything We're still trying to figure it out what it is

[@ehlersdanlosandi]

@AyyMJ if they're not keen to give you an official hEDS diagnosis since you don't quite meet the criteria, then I would push for a hypermobility spectrum disorder (HSD) diagnosis. It's similar to hEDS and is supposed to be treated the same as far as physical therapy recommendations and such.

[@BrownEyez4801]

I think my son has this. He’s 3 and is already diagnosed with hypotonia and hyper mobility by genetics. Is there therapy or treatment needed after diagnosis? My son is already in physical therapy. The therapist is working with him now about him extending his knees/legs all the way back.

[@ehlersdanlosandi]

Physical therapy to help strengthen joints is usually recommended, but at such a young age, I'm sure there are different recommendations. It sounds like he's at least on the right track! There really isn't much for set EDS treatments, it's more about treating symptoms as they come and preventing injury.

[@napoleontheclown]

I'd say that a population level tool (Beighton) shouldn't be used as a diagnostic criteria, but it seems like that lesson hasn't been learned for BMI yet, sooo....

[@TheParacosmicTraveler]

Who do I bring this to to fill it out? Can my pcp do this paper?

[@ehlersdanlosandi]

Good question! Technically, any provider who's knowledgeable about hEDS could use this printout to evaluate and diagnose you, but unfortunately, most aren't knowledgeable or comfortable enough to make that diagnosis. I would recommend making an appointment with your pcp to discuss your concern that you might have hEDS and ask to be referred to a geneticist for evaluation.

[@TheParacosmicTraveler]

@@ehlersdanlosandi thanks!! Will do =]

[@ehlersdanlosandi]

@@TheParacosmicTraveler you're very welcome!

[@eight-ball3625]

My dna reports I have it. So. have things changed?

[@ehlersdanlosandi]

Nothing has changed, the hypermobile subtype genetic marker hasn't been found yet. If your DNA came back as positive for EDS, it's one of the other 12 subtypes of EDS and your geneticist or genetic counselor should have explained the results to you as far as what subtype you have and what to expect from that particular subtype.

[@Mommyandbell]

9/9 35y/o

[@Mommyandbell]

I can do a split but never could do a straddle

[@Catlily5]

The geneticist I was referred to refused to meet with me. He told my PCP doctor that based on my chart I probably have Ehlers Danlos but there is no reason to test me for it. He did offer $1000 genetic testing which I can't afford. My question is why didn't he give me this questionaire?

[@ehlersdanlosandi]

I imagine he probably didn't give it to you because it's something best done with a genecist or hEDS knowledable doctor and not on your own, and most likely he meant (in his opinion) no reason to genetically test for it since there is no genetic marker found yet. As in, he thinks going through the motions of an official diagnosis of hEDS isn't worth his or your time, which I disagree with. If you're interested, the company Invitae has a connective tissue disorder panel for $250 without insurance (less with), If I remember right, they have geneticists and genetic couselors to help you with the process if your own doctor won't. I don't believe they will help with an actual hEDS diagnosis though.

[@Catlily5]

@@ehlersdanlosandi The doctor that said all that was a geneticist.

[@ehlersdanlosandi]

@Cat Lily I got that, it's especially disappointing that he was the one who turned you away. I've heard of geneticists turning away suspected hEDS patients because they have too long of a waitlist and prefer to see patients that can actually be diagnosed with genetic testing versus a clinical diagnosis, but he could have at least passed the criteria to your PCP to say "I think she has this, here is how to evaluate her officially since I don't want to."

[@Catlily5]

@@ehlersdanlosandi I agree. And my PCP (primary care doctor) is unlikely to refer me to someone else.