Hypermobile EDS Diagnostic Criteria On 5 People w/ Ehlers-Danlos

In this video, five people with hypermobile Ehlers-Danlos Syndrome run through the hEDS diagnostic criteria from 2017! Hypermobile EDS is a painful genetic connective tissue disorder that makes connective tissues abnormally weak, fragile, and stretchy, leading to chronic joint and muscle pain, joint instability and dislocations, dysautonomia, fatigue, and GI tract dysmotility, among so many other symptoms. While the diagnostic criteria help to diagnose, it barely scratches the surface of the impact of this disease.
The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.

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The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.

MORE INFO ABOUT EDS:
MORE INFO ABOUT POTS:
MORE INFO ABOUT GASTROPARESIS:
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:

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#eds #ehlersdanlos #hypermobileeds

[IzzyKDNA]

🦋Please subscribe to help out my channel and learn more about EDS, POTS, and genetics! 🦋
⚠️just a reminder that MOST people with hypermobility don't have EDS...otherwise, over 20% of all people would have EDS lol ⚠️

[mandalynn]

The family criteria is frustrating when you have multiple family members that have symptoms. But none have a diagnosis because none of our doctors had heard of eds until we mentioned it

[BustlingHome]

I'd love to see all these manifestations of EDS next to one "normal" person. I didn't know that hypermobility was abnormal until my mid-20s, so who knows what else I might think is normal that isn't. 🤷‍♀️

[DougKremer]

I was diagnosed hEDS last month as a 46 year old guy. Scored 9/9 on Beighton. I had no idea people aren’t supposed to be able to move this way, it’s always been my normal.

[dovenart]

This popped up randomly on my home page, and within the first few tests, I realized I could do all of these, and have been my entire life. I've been struggling with dislocations since I was 8, have had more tests than I can count, multiple surgeries, injections with 6 inch needles, the works. And nothing ever helped. I'm fully disabled to the point of often needing a wheelchair because of chronic pain, or dislocations. What I call my "loose knee days" where every bend could move into a dislocation or subluxation easily. And in 10 minutes of this video, I had an answer that doctors haven't been able to give for years. I'm bringing this to my PCP soon, and we'll see how it goes. But this, honestly, has given me hope that there *is* an actual answer for all of my pain and illness.

[starlasweda]

A retired occupational therapist here. Worked in pediatrics for 51 years and always checked the children’s range of motion. I found that the children with hyper mobility resisted handwriting tasks due to fatigue. I would have the children work on tasks to alert their muscles to contract, such as, “push, pull, and vibrate”, this is the Golgi tendon organ. We hammed modeling clay, move furniture with a push, Dust Buster or hair dryer, and monkey bars. Found that the child improved grip strength doing exercises at least twice a week for a short 10 min. Session.

[NiaJustNia]

THEY MIGHT'VE FOUND THE GENE?!! I cannot express how excited I am. My DNA is currently in the research pool when I consented for research for genetics when I went to the geneticist in Aberdeen, so hopefully my genes might be out there to help in this research 😊

[mashaparfenenko]

I actually work in genetics, and at some point we had a patient who potentially has hEDS, and after he left the room, we started discussing and I said “I have more EDS symptoms, than this kid”. Our main connective tissue person in the department evaluated me and said “well, you do”.
I meet those criteria as well ☺️

[diray]

Seeing your actual examples of stretchy skin etc. makes me feel better about my upcoming appointment to get diagnosed. I'm always sitting at home bending my joints and stretching my skin, wondering 'is this enough or is this normal?' because I simply lack a frame of reference. Sitting here doing the test with you as diagnosed people and seeing everything perfectly mirrored back at me was so reassuring. Thank you!

[maddiechumley-jones]

My EDS clinic calls the hEDS "bread dough skin". It is soft in a way that is like bread dough so not just texturally soft but soft to the grab, the fun thing here is different doughs have different types of so it explains the variation in stretchiness as well.

[mikaylacameron]

My kids and I were told by their paediatrician that we are hEDS, we’re all freakishly flexible, have stomach issues, joints that crack, pop and fall out of place (we’ve learned to reduce them ourselves much of the time but sometimes a chiropractor or more drastic intervention is required (like that time of bending at the waist to pick up a seedling caused 5 discs to slide on out), chronic pain, headaches, irritable uterus, brutal bruising, and last year my retinas started to separate (for lack of a better description). EDS is quite “the thing” although entertaining to do namaste hands behind our backs, drop thumbs out of handcuffs (don’t ask 😂), and super helpful for washing our own backs and not looking our age 😜

[HouseKatArmy]

Would be interesting to see this done with some people over 50 like me, for whom this was not even a diagnosis that existed when I was young and even more hypermobile than I am now. I could do every one of the things on the list when I was a kid, but not so much now, but still have all the horrible joint pain and instability, GI issues and dysautonomia issues. I do pass on 5.

[nataliegray]

I have not been formally diagnosed with H-EDS, but I passed all the criteria with flying colors. It actually explains a lot. The "did you freak out your friends as a kid/teen with your flexibility" question really gave me a chuckle, because I used to do that. All. The. Time. At one point, I could bend my spine backward far enough to touch my toes to my scalp, and I can bend the first joint of every finger without moving the others. Looks freaky AF, but doesn't hurt at all. I actually almost made someone puke with my "witch fingers" once. 😅

[Cheeky__Chops]

I just got diagnosed with HEDS on 23/07/21 and I'm 39 years old, it's been a long time feeling like the odd one out so it's lovely to see others with similar issues to me!! 😍

[yowyo]

I was diagnosed about 7 years ago. I am one of the few that actually went from "borderline" to "yep it's hEDS" with the new criteria. It didn't happen to many but as soon as my doctor saw the 2017 criteria and we ran through it all again, I am firmly in the hEDS category instead of borderline.

[kkzzwnw]

I've been having issues with chronic joint pain and musculoskeletal pain for YEARS. In the past year, I've actually been trying to figure out whats going on because I've had new symptoms arise like shoulder tendinitis, muscle twitches, and numbness and tingling (which has gone away already). I've been through 2 rheumatologists, an orthopedic doctor, 2 neurologists, physical therapy, occupational therapy, pain management clinics, and endless numbers of tests this past year alone. The common denominator is that I am definitely hypermobile and have hypereflexia which could be causing all the chronic pain. I've gotten referred for connective tissue genetic testing (which no clinics are doing around here because of staff shortages due to COVID). I don't know that its EDS but I can say that hypermobility is a bitch and causes so much debilitating pain. Its such a shame that our healthcare system isn't built to treat patients like this
Edit: forgot to add I've had worsening gastrointestinal issues and going to see a doctor for that too. Everyday I swear its a new symptom 🙃

[alysonsylva]

I really enjoyed this video! I was always the kid that was doing the splits and sticking my foot in my rib cage to show everyone. I never knew it was something until I was over 40 and started getting hernias. Over the course of 10 years, I got over 10 hernias, including 4 "huge hiatal hernias" that caused my stomach to go into my chest. Not one single doctor suggested hypermobility or EDS. I am 65 now and plan to get a diagnosis as soon as I can.

[MillsSkits]

It was interesting to see the criteria demonstrated on multiple people, especially the hypermobility. I've seen videos online of people without hypermobility demonstrating it, which isn't great. I have to agree on the soft skin thing--so subjective! I had to check my diagnosis to see if it was checked. Looking forward to the next video with this group!

[watchingthebees]

I’m autistic and I’m really considering that I have hEDS or HSD. I’m very hypermobile, have pain on my knees pretty much 24/7, get random pains on my ankles/neck/elbows and dislocated my knee when I was sleeping; I also have intense gastrointestinal problems and circulation issues. I don’t think mine would be too severe, but the pains I have on my knees really bother me (although I’ve had them all my life so I got used to them when they’re not too intense. When I was a kid, I used to think that you could break your legs backwards and lose your shins if you extended your legs too far out when you were standing, so I would try not to stand “too hard”. I guess that says a lot lol, I think I should get tested)

[auntlissy]

I soooo wish there were channels like yours when I was diagnosed with HEDS 21 years ago! I was diagnosed at age 20…after being a competitive swimmer for 13 years (butterfly was my thing!), and after 6 shoulder surgeries had failed. I’ve now had a total of well over 80 surgeries on all my joints (I stopped counting at 80…too depressing). After 36 failed surgeries on just my left shoulder (9 of them being extensive limb salvage), I ended up having an amputation. I am in severe nerve pain (due to nerve damage) 24 hours a day, on top of some pretty severe joint instability/pain pretty much everywhere. Going over all of the criteria, I’m saying yep to almost everything. Ugh!!! 🥴
It is incredibly frustrating…there’s only a couple of people in the medical community in my area who have ever even heard of EDS, so when I have an appointment, I get bombarded with questions. They don’t want to do the research! 🤦🏻‍♀️ Thankfully I found the one GP locally who seems to have a good grasp on it, as does my pain specialist, but I have to travel 2 hours to Chicago to see any other than those two docs.