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

Рет қаралды 466,057

3 жыл бұрын

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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HEDS DIAGNOSTIC CRITERIA 2017: ehlers-danlos.com/wp-content/...
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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:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
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#eds #ehlersdanlos #hypermobileeds

Пікірлер: 1 600

@IzzyKDNA 2 жыл бұрын

🦋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 ⚠️

@AnnekeDelport Жыл бұрын

I am curious if you also have an absence of a lingual frenulum like me? This is a newer discovery of EDS I believe.

@KC-gi9ol Жыл бұрын

True which would be like 1 in a 120k. However, new research indicates that hEDS is thought to be 1 in 500, *not* the 1 in 5k to 10k as originally thought. Bottom line it is more prevalent and not as rare. Therefore, many of us have been misdiagnosed and/or not diagnosed for literally decades and more medical professionals should know about it.

@Red_Queens_Jubilee_Club Жыл бұрын

Very well done presentation. I only came across EDS information recently while reading about a friend’s great-niece’s health issues. With the exception of weight discrepancies and diabetes we have the same health problems. I am on insulin and I think it causes me to have higher weight. I’ve got Gastroparesis, all the fun joint tricks, one leg where the ball slips out of the socket. Of the 4 children my parents had, I am the one who inherited the double joints from our mother.

@b_uppy Жыл бұрын

'Stree-A' is how I have heard 'striae' pronounced. Easier to hear, as well.

@Bonnie_Lou Жыл бұрын

please look bellow for me x

@mandalynn1384 3 жыл бұрын

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

@IzzyKDNA 3 жыл бұрын

That is very frustrating. I'm sorry to it has been so hard to find a doctor knowledgeable about EDS

@mitsycat2803 2 жыл бұрын

My mom is one of 9 and about half of her siblings met the criteria, including her. Not sure about my cousins, but I've of them probably does somewhere. One aunt in particular for sure has it, but has been in denial about it since I mentioned my dx years ago. After her last hip replacement and knee replacement she started to consider it. I actually think my cousin passed away with vascular eds, but I don't have it in me to mention it to my aunt. He passed away at 30. No cause was ever found despite a thorough autopsy and he was a surgeon in peak physical condition. He had other symotoms throughout his life too. Thankfully, the testing for that is more accurate than the testing for HEDS, so my geneticist was able to confirm that I do not have that one. Still... everyone in my family holds their breath until they are 31.

@lisasteel6817 2 жыл бұрын

My grandma who was 98 least year when she passed could still touch her toes.

@coda3223 2 жыл бұрын

@@IzzyKDNA Even knowledgeable docs (my neurologist is involved in some research) will avoid evaluating (instead just dx JHS) because it's faster and easier. 😞 And my gp (who dx herself w/ type 2) doesnt seem to be knowledgeable about hEDS.

@dana102083 2 жыл бұрын

My sister is the only one who really presents as bendy with issues and my entire moms side of the family all have joint issues, healing issues, reperferating wounds.. But my doctor said he took it into consideration although it wouldn't stand alone. I had my geneti s referral by phone mid covid lockdown, but in person he said my skin, my palate and a long list made it. I was prepared to not get it based on family, though!

@BustlingHome 2 жыл бұрын

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. 🤷‍♀️

@coolgirlfrozenfeet 2 жыл бұрын

I totally understand that. I had no idea that these things were unusual.

@gracehofferbert5139 2 жыл бұрын

I didn't find out that I have eds until after I lost my leg and had a kid.. So in my opinion is just not talked about enough. I truly believe it's way more common than recorded and in my experience, not enough doctor's know about it.

@forgetful_hq 2 жыл бұрын

i’m guessing you may of already seen it but if not, she has posted a video with a person who doesn’t have EDS going through the criteria!!

@milesfinnegan6015 2 жыл бұрын

@@forgetful_hq I couldn't seem to find this video, do you have a link by chance?

@forgetful_hq 2 жыл бұрын

@@milesfinnegan6015 of course!! here it is kzfaq.info/get/bejne/n76egrWEp6vOoKc.html

@dovenart7546 2 жыл бұрын

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.

@dw7939 2 жыл бұрын

Get yourself to a good EDS familiar Genticist, also look up POTs (Dysautonomia), Mast Cell Activation and Hughes Syndrome. Good luck.

@ptsd73 2 жыл бұрын

Good you found this!

@teresamorabito1655 2 жыл бұрын

Same here.. just had knee surgery

@Oscyy2 2 жыл бұрын

Same

@dovenart7546 2 жыл бұрын

UPDATE: Tentatively Diagnosed!!!! My doctor heard how serious my worries were and brought me in for an appointment as early as he could. He went through everything with me, and said that I meet all the criteria! He's got it in my file now, and has me being referred out for genetic testing to rule out any other subforms of EDS, and other potential causes, but he said that he's pretty confident in the hEDS diagnosis based on everything I brought him. This has literally changed my life, and how every doctor I've talked to is treating my pain and my subluxation complaints. Thank you *so* much for posting this video, I cannot tell you how much this has changed my life. I've been crying in relief for days now.

@DougKremer 2 жыл бұрын

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.

@TheMazinoz Жыл бұрын

Yes, I used to think all the other kids at ballet just weren't trying!

@Larissa_aus316 Жыл бұрын

Same. I was diagnosed as hypermobile at 43 but could do all these things today and now realise I actually have EDS.

@cic5347 Жыл бұрын

I always knew I was double jointed and flexible, but I didn’t realize the extent of it until doing all of what they can do. I wonder if I am just hyper mobile or could have something else that is similar. Does everyone with eds have chronic pain? If so I’m wondering if I could possibly have a mild form of Marfan syndrome then especially since I have always been tall and slender and I have longer arms. I messaged my doctor so hopefully I’ll find out if it’s worth looking into and getting evaluated.

@TheMazinoz Жыл бұрын

@@cic5347 In US try to see a geneticist. Look into chronic pain/arthritis home treatments in meantime if not already. CBD oil orally?

@Larissa_aus316 Жыл бұрын

@@cic5347 definitely worth checking out because there can be some serious symptoms of marfans you may not be aware of (heart probs etc) Best of luck🧡

@starlasweda1350 Жыл бұрын

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.

@sadtiger2022 10 ай бұрын

That's really interesting because I struggled all through grade school in the 80's with hand written assignments. I would fatigue so quickly. I've had to work on my grip strength my whole life.

@MexicanTeTe 10 ай бұрын

I was always hypermobile and did that exact kind of therapy for years to improve my handwriting when I was little.

@mariec7092 10 ай бұрын

I am also fatigued with texts. I have long thin limbs and carrying things at arms length including my arms all day, makes me seek relaxed positions and I think small controlled movements like text-writing really taxes the heart, especially when uninteresting. I don't even think I could do anything to change it, unless I improved my heart's health from an emotional engagement perspective. Same with my head, has always felt heavy leading to bad posture. Thanks to this comment, I am starting to connect certain things.

@Jmay411 10 ай бұрын

I actually have really good grip but I exhaust easily too.

@jeme7339 9 ай бұрын

Interesting...handwriting is almost painful to me. Yes, I am hypermobile.

@mashaparfenenko905 2 жыл бұрын

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 ☺️

@NiaJustNia 2 жыл бұрын

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 😊

@larinavigil5225 2 жыл бұрын

What is it?! Where do they list updates? I genuinely believe I have it, but struggle with doctors wanting to diagnose me or giving answers in general

@NiaJustNia 2 жыл бұрын

@@larinavigil5225 So for diagnosis you either need to demand to see a rheumatologist or a geneticist. The genetic testing for hEDS isn't complete yet, so you still have to be diagnosed via symptoms. I saw a rheumatologist who diagnosed joint hypermobility syndrome, and then a geneticist who modified that diagnosis to Ehlers-Danlos Syndrome

@larinavigil5225 2 жыл бұрын

@@NiaJustNia thank you! It’s been such a struggle!

@NiaJustNia 2 жыл бұрын

@@larinavigil5225 I run a chronic illness and disability discord, there's people from all over the world on it, so if you want to come to chat or get advice, or just be able to feel less alone in the struggle, I'm happy to send you a link 😊 it's LGBTQ+ inclusive

@tproudboomer5965 Жыл бұрын

@@NiaJustNia I have seen two rheumatologists, and after rheumatology panel being negative, both refused to give me a diagnosis. I have most of the classic signs and symptoms.

@diray3474 Жыл бұрын

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!

@evie7500 Жыл бұрын

hey! how did your appt go? i’m on the path to being evaluated and diagnosed and i’m curious :)

@davedahowell8694 Жыл бұрын

I agree completely. There are always these extreme examples, especially of stretchy skin and that is one that was hard to gage. It would almost be better to know how normal skin stretches to know what is not normal.

@blablatructruc Жыл бұрын

Just two had stretchy skin. The others are normal.

@purpleunicorn87 10 ай бұрын

@@blablatructruc which two?

@ProbablyBees 10 ай бұрын

exactly the same. I've been doubting my hypermobility, stretchiness, and scars forever but mine are just like these people

@maddiechumley-jones7000 3 жыл бұрын

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 streeeeeetch so it explains the variation in stretchiness as well.

@malanamarie5206 3 жыл бұрын

I was wondering why my geneticist was squishing my arm to see how soft or stretchy it is 😂

@gothicgirlfriend7375 2 жыл бұрын

I have the velvet skin and it's only thing I like about having this stupid thing. At least it's something

@dana102083 2 жыл бұрын

@@malanamarie5206 mine racked mine with his fingers too haha to feel the fascia just like the piezogenic papules in the feet..

@malanamarie5206 2 жыл бұрын

@@dana102083 mine did that too until then I wasn’t aware that it was all over the body and not just the heels. I always thought the little bumps were normal!

@dana102083 2 жыл бұрын

@@malanamarie5206 yeah!! Im a nurse but i had no idea what fascia was..its not well known at all. Its like tiny ruptures because its like cheesecloth..thats how i see me lol :)

@Cheeky__Chops 3 жыл бұрын

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!! 😍

@IzzyKDNA 3 жыл бұрын

I totally know what you mean! It feels so nice when you see others who are so similar whereas we normally never see people going through this

@Dulcimerist 3 жыл бұрын

So thankful you were finally diagnosed! That was around the age when I finally received my hEDS diagnosis, although it was suspected when I was 21 back in 1996. Unfortunately, the rheumatologist ignored the 1996 referral orders and only checked me for Marfan syndrome.

@itsbernadette8233 2 жыл бұрын

I was diagnosed this last year at age 36- I know the feeling! It's nice to know I'm not crazy and/or lazy (thinks you hear/feel growing up as the odd one out) you're not alone!

@Dulcimerist 2 жыл бұрын

@@princeloup5093 Check the Ehlers Danlos Society website for the worldwide directory of doctors who specialize in care of EDS patients. For a GP, finding one that specializes in internal medicine and can coordinate your care with other specialists is key. Also, if you're in the USA, you need to be referred to a pain specialist in order to have your EDS properly addressed. Laws went into effect six years ago that limits pain management specifically to pain specialists, and my rheumatologist had to bump me over to a pain specialist at that time. Physical therapy designed for EDS patients has also helped a lot to reduce pain. Treatment of EDS is all about mitigating symptoms, and seeing specialists for each area of concern. There are medications that can treat multiple EDS issues; so if one doctor doesn't prescribe it, a different one might. For example, Mestinon (Pyridostigmine) can treat POTS/dysautonomia so a cardiologist or neurologist could prescribe it, but it can also treat gastroparesis and dysmotility so a gastroenterologist could also prescribe it. Another example is nightly low dose Catapres (Clonidine) can treat POTS/dysautonomia, pain, migraines, RLS/insomnia, anxiety, and other issues; so a wide array of specialists could prescribe that one. Finding medications that can treat multiple symptoms is also helpful, since it can reduce the overall number of medications that a patient is on.

@ThisIsYourOnlyWarning 2 жыл бұрын

Hey, I’m the same age snd said yes to almost all of these. I can’t even get my family doctor to take me seriously and check my concerns. She dismissed me twice saying that if I had this, I would’ve been diagnosed as a child snd since I wasn’t; then there’s no way that I could have EDS. I’m so frustrated and just want to know either way?

@mikaylacameron5785 3 жыл бұрын

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 😜

@Lindamorena 2 жыл бұрын

Wow thank you for sharing. It know this isn't easy. I appreciate the positive outlook, despite the difficulties. Are you eyes better now?

@NightMystique13 11 ай бұрын

Funny how family seems to have a hard time accepting this dx. I look ok on the surface but I have limitations due to this. Now my daughter is showing worse (by far) symptoms. Hope it doesn’t take years for her, with me having the dx as well.

@mikaylacameron5785 11 ай бұрын

@@Lindamorena no - they have black spots throughout my vision. 🤷🏻‍♀️ it won’t change. I have to be super careful and kind of freak out a little on the inside when I start seeing stars or sparking. It’s generally “nothing” but I do worry that it can become a bigger something. Life goes on though and I have worked out adaptations around things as best as possible - it’s all we can do to be honest, and living in a bubble is not at all my jam 😅

@Seeker0fTruth 10 ай бұрын

Do you mean like floaters? I have many of the criteria and just developed floaters and it’s so frustrating

@mikaylacameron5785 10 ай бұрын

Like black dots that zip around in my vision. They’re like debris/cell material or something? I was like m’kay so can we get rid of those? Short answer - no. I also have those things that look like amoebas but I think those are common in lots of non EDS as well

@alysonsylva 10 ай бұрын

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.

@yowyo2006 3 жыл бұрын

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.

@HouseKatArmy 2 жыл бұрын

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.

@Little.MissDiagnosed 7 ай бұрын

That is in the criteria. If you had a history of it and it’s now “stiff” or locked or feels “arthritic” etc.

@HouseKatArmy 7 ай бұрын

@@Little.MissDiagnosed When I got in a room with a PT who knew what she was looking at, I got diagnosed with hEDS in about 10 minutes, actually had an 7/9, but then later got gene testing and I have classical like EDS due to TNXB deficiency. It's crazy how long it took to get this right.

@MJ-gj6mj 6 ай бұрын

@@HouseKatArmyThe PT has said as much, but for me it's getting the Dr. to see as well. What type of Dr. actually listened to you and ordered a test?! I'm to the point I just want to order genetic testing myself and take the results in but I don't even think that's a thing.

@HouseKatArmy 5 ай бұрын

@@MJ-gj6mj I ordered my own genetic testing and paid out of pocket for it, I had to distill out the relevant genes and send them to my doctor and beg them to look at it. Basically. It was my endocrinologist who finally looked and figured it out because I also have adrenal insufficiency which turned out to be caused by Congenital adrenal hyperplasia, she saw it in my gene and it turned out that I have a contiguous gene deletion that spans two genes (CYP21A2 and TNXB) that causes both. But I had to push to finally get it figured out.

@nataliegray8019 8 ай бұрын

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. 😅

@Aroacerat 7 ай бұрын

I bend my fingers 90* when simply reaching out with my palm up to grab things from people, and it freaks them out. That ain’t normal? I mean, I get by the fact that it freaked them out it ain't normal, but still.

@meadowfraser1033 4 ай бұрын

i used to be able to touch my butt to my head by bending backwards

@pancake.squirrel 5 күн бұрын

Haha! When I was 9 I was flexing the double joint in my thumb and the babysitter freaked out about it. Years later I was experiencing pain and my doctor said “probably joint hyper mobility” and now I just casually have a disability

@auntlissy1792 2 жыл бұрын

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.

@pamelabrown7368 2 жыл бұрын

Prayers for peace, comfort and healing for you. God be with you!

@MaryBethLang Жыл бұрын

I have a Dr at University of Chicago. I have to drive there from South Bend, but I won't be able to see well enough to get there after this summer.

@Arp477 9 ай бұрын

God bless you! 😮📖🙏

@mysticzebra5421 9 ай бұрын

Ah, now I know why I was banned from learning proper swimming forms from an early age. I thought myself how to swim along with backstroke and other simple ones by seeing others, but I can't do them for very long befire I need to switch back to my weird form of doggie paddle. I mainly just like to float on my back and take a nap since the water is so relaxing. I try to enjoy the water any way I can without causing myself harm. I'm so sorry that something you were passionate about ended up causing you harm. I hope you find simething that improves your nerve pain.

@watchingthebees 2 жыл бұрын

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)

@IzzyKDNA 2 жыл бұрын

It sounds like it’d be a good idea to mention it to a doctor, especially since you’re dealing with so much pain! ❤️❤️

@jutta3378 Жыл бұрын

That's interesting that you mention you're autistic and have issues with hypermobility. I'm the same, both autistic and hypermobile. This excellent video has helped me to kind of join the dots finally. I'm also going to look further into this. Good luck with your own investigation.

@helenwoods1467 Жыл бұрын

Same!!!

@saphirefoxirl 10 ай бұрын

I'm autistic too and known I probably have hEDS for a few years (but never gone to a doctor about it). I've heard it's fairly common for the conditions to occur together.

@SchlichteToven 10 ай бұрын

@@saphirefoxirlI haven't heard that. I've heard of anxiety disorders and depression overlapping with EDS, but not autism.

@MillsSkits 3 жыл бұрын

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!

@catinabox3048 2 жыл бұрын

I actually think the opposite. I don't think I have EDS but I definitely meet the majority of the hypermobility criteria. I've always thought it was normal, for example, to be able to touch your thumb to the wrist since it doesn't hurt or stretch at all. I've never seen someone who can't do these things attempt it genuinely and I would love to see someone do that. It seems that a lot of them are just demonstrating "how to" do it without actually attempting to see where their own limits are.

@MillsSkits 2 жыл бұрын

@@catinabox3048 A video you might find helpful, here on KZfaq, is "The Beighton Score | Generalized Joint Hypermobility (Laxity)" by Physiotutors. The person it's demonstrated on appears to have a normal range of motion (not hypermobile).

@anyascelticcreations 2 жыл бұрын

The only reason I know that my skin is soft is that people always tell me that. My thought was always that skin is skin. What, did they expect it to be rough? But apparently it's unusually soft. 🤷‍♀️

@piddly 2 жыл бұрын

@@anyascelticcreations absolutely agree! As they went through all of these criteria, I was just reflecting on my whole childhood and adulthood. Naturally, as I’ve become older, you would think a 38 year old would say, “I used to be able to pop into splits when I was a kid” to still not be something true. Then as they unveiled all the other things, on top of the little bumps on the heels … I thought it was just something people got when they got older or something, it just really helped me to now seek out help if needed with the pain that started on and off ten years ago that I chumped up to just getting older after years of dance, other reason why I bruise so easily, and teaching my body to not double joint. But the soft skin one blew my mind. Always had people tell me my skins was baby soft. Again, turned 38 today and that baby soft skin is still there and elastic skin is a little less so (38 + job + slower metabolism makes it a little thicker these days). Not sure if this means I should get tested and have it on file or wait until there is a problem. Good things to check in when I get my yearly I guess. Enjoy your soft skin. 😉 One of the pluses of this condition.

@anyascelticcreations 2 жыл бұрын

@@piddly Yeah, I hear you on looking back at your entire life. Same here. So many of the criteria they mentioned I just thought were normal, too. Like the heel bumps. I thought they were just part of getting old. Happy birthday, by the way! 🎂 As far as getting it checked out, I would say that if you have access to medical care now then definitely do. I gave up on finding a diagnosis for my chronic pain and fatigue while I still had health insurance. I am no longer able to work or pay for medical insurance or to go to the doctor at all. So it would be next to impossible for me to seek diagnosis now. And no diagnosis means no disability. I didn't see this coming at the time. So, if you can get diagnosed now, I say go for it. Especially if this can be considered a disability. Just in case you will need that down the road. I do hope you have a wonderful birthday. And you enjoy that soft skin, too!

@user-kk4zz8wn1w 2 жыл бұрын

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 🙃

@omgeeash Жыл бұрын

Just curious to see how you're doing now!

@user-kk4zz8wn1w Жыл бұрын

@@omgeeash oh wow thanka for checking in! Haha I was officially diagnose with hEDS which answers a lot of questions. There is still a lot that is unanswered since all my test results come back normal. I ended up finding an EDS coah online that helped me a lot. I realized I was gonna have to really do the work and find my own resources and pay for them out of pocket when I have the luxury to do so. Its nice to have an answer and knowledge on how to better manage my symptoms. Hope you're doing well 😊

@hihigeorgie 9 ай бұрын

wow this has been exactly the same for me. Ive been struggling to get any kind of help :(

@mawbell3 9 ай бұрын

You are describing my life. I’ve always been hypermobile my mom was hypermobile. Her father was as well. So I may look into it. Question? What do docs do about the pain and the gastro issues?

@MJ-gj6mj 6 ай бұрын

@@user-kk4zz8wn1w Hi what have you been doing to manage now? I think I will have to lay out of pocket to get any answers and/or relief honestly. I don't even know where to start but so ready to help myself somehow! I've been to rheum, ortho, PT, PCP etc and so on. Tired of the same runaround!

@Xbangbangxgunsgobang 2 жыл бұрын

I’ve questioned this for years but never thought I actually would pass the criteria, but seeing all these different examples is SO reassuring! I’ve suffered in silence and confusion most of my life, and this makes me feel so relieved. There’s an actual answer! Thank you guys so much for making this video! ❤️❤️❤️

@anyascelticcreations 2 жыл бұрын

At almost 47 I still pass nearly all of this. In my mid 20s I saw so many doctors trying to figure out why I hurt so much and always feel so sick. Lots of stuff was suggested. And I got as far as being diagnosed with hypermobility. But I've never even heard of EDS. How is it possible that not one doctor ever suggested this? I eventually gave up on finding any further diagnosis. Though I almost certainly have comorbidities as well. I've never been treated properly for anything because I lack diagnosis. I'm a bit frustrated with the medical community, to be honest. Yes, it is a tough journey for sure.

@catlovingnerd21 2 жыл бұрын

I was diagnosed with general hypermobility when I was about 12 because my primary physician thought I might have marphans. less than a year ago, I found out that hEDS is a thing, so I looked into it. it explained so many of the issues I've been struggling with my whole life. I'm still trying to find a doctor so I can get a diagnosis. I'm just so glad I finally have a name for it. thank you for making this video!

@stacielzuniga Жыл бұрын

I'm 58 and going to discuss this with my doctor. I've been hypermobile my whole life but am now finding many symptoms of EDS. 2 of my daughters have the same symptoms as me. Thank you for all this info that I will definitely take to my Dr.

@FH-vp3hp 2 жыл бұрын

I appreciated this video SO MUCH! I had never heard of EDS until this came up in my feed. I watched it, thought “hum this explains a lot”! I went to the EDS website and found a doctor in my area and was just diagnosed with hEDS last week. At 43! This has answered so many questions that I have had about my health, my Mom’s health, my Grandma’s health… and it has given me the knowledge and power to help my children so that they don’t have to go through decades of being told its all in their head. Again thank you!!! 🙏 🙏🙏

@TheAbbyNormal 3 жыл бұрын

Needed this. I'm going in Monday for an official "do we think this is worth pursuing" thing with my doctor on Monday, who is good and understanding and patient, but I'm still terrified to get the "nah, you're fine" haha.

@IzzyKDNA 3 жыл бұрын

good luck!!! I hope they can either rule it out or diagnose you :)

@louisehodgson4258 2 жыл бұрын

Same, my doctor is saying I just have hsd. My private physio says I should push (they have eds and was the one who was concerned and told me to get looked at) but idk

@mlejb4 2 жыл бұрын

How did it go??

@TheAbbyNormal 2 жыл бұрын

@@mlejb4 Ah! Well! My doctor set me on a path of blood tests and evaluations to rule out things like rheumatoid arthritis and stuff. Still waiting to hear back, and I have a follow-up next week

@dana102083 2 жыл бұрын

@@TheAbbyNormal that sounds like a great start to rule out things for section 3! Did they do the beighton test?

@journal_4_you 3 жыл бұрын

I was diagnosed with generalized HSD and I don’t believe it’s a downgraded diagnosis. I do have many of the same comorbidities of other people with Heds! UPDATED 4/23/2022: I went to genetics and they diagnosed me with hypermobility Ehlers-Danlos syndrome. I went to see my rheumatologist last year he wasn’t able to do the full assessment for heds.

@xanaria 3 жыл бұрын

I was diagnosed with generalized HSD too because I failed the Beighton test. But I have hyperlaxity on my hips or shoulders and that's not a part of the Beighton test which is honnestly very confusing and problematic. Last week my sister was diagnosed with a hEDS and so now I tick a new box that automatically evolve my diagnostic into a hEDS. My difficulties and sufferings didn't change. So yes, I think we have a problem with the New York 2017 criteria.

@louisehodgson4258 2 жыл бұрын

Same, I've been told to push for eds tho. I'm not sure if it's worth it mainly as I don't know the differences 😅 I just know I dislocate and get pain lol

@annesofiestisen239 2 жыл бұрын

I dont know if i should laugh or cry knowing that my knees actually go even further back than the omes you all showed….time to up my joint-muscle-support-strenght exercises methinks!

@marcisnee2150 2 жыл бұрын

Same

@alyjo8645 2 жыл бұрын

Fellow hEDS Dr here. I love seeing all of the research and that it’s being worked on by people who live with EDS. Depending on what my body is feeling like, sometimes I get stiff(I have RA too) but I can do a majority of these tests. My original rheumatologist was actually the one who had me bend and hyperextend to do these lovely tests and it wasn’t until maybe 7 years later that I got my official hEDS diagnosis. I’m really glad that I came across this video and your channel

@MJ-gj6mj 6 ай бұрын

Why 7 years later?

@TheChronicExplorer 3 жыл бұрын

Its always interesting to hear about the family criteria too as so many forget that it most commonly comes from somewhere. For me I was diagnosed first but my mom was at my appointment and we were able to identify it back several generations on her fathers side based on their symptoms/surgeries etc. it also explained so much for my mom about her body and pregnancy complications that were all suddenly explained by the diagnosis. ALSO so cool seeing so many hEDSers all together!

@bookfaerie23 3 жыл бұрын

Thank you for this. I feel like sending it to the rheumatologist I saw about 5 years ago who basically said I was full of crap while telling me that the tips of my fingers were hypermobile. (He refused to do anything without sending me to a geneticist, and he didn't want to do that.) And hey, I didn't know those bumps on my heels were anything! I'm 53, and it would be so nice to finally have something. I've hurt for so. d***. long.

@tarp11z 2 жыл бұрын

This has to be the best KZfaq video for a diagnosis I have ever seen. Great job guys.

@aninarohr9205 Жыл бұрын

Thankyou so much for filming this! This has helped me a lot and I feel a bit less lonely in this. Thankyou!

@sherrichabino1317 3 жыл бұрын

This was a great video so interesting seeing how everyone met the criteria!!

@SaraShire 3 жыл бұрын

That was fun watching you all going through the criteria. I remember when the new criteria came out, I thought maybe I didn’t really have hEDS. I guess I was hoping I had something fixable! But I met the new criteria, too. I had never noticed those white things on my heels before! I was 54 when I was diagnosed. I wished I had known younger. I happily donated a white coat in memory of Jaquie. Keep up the great work. ❤️

@jnanashakti6036 8 ай бұрын

Also, this video makes this screener so easily digested for folks that don't understand clinical terms. Very much appreciated!

@karaarroyo3374 Жыл бұрын

I just watched this, and I passed on every test! This explains so much. Thank you for posting this ❤

@fdorgham 2 жыл бұрын

I actually started looking into this a couple years ago and have each of the signs mentioned minus those affecting the aorta. I have been diagnosed in the past with ligamentosis laxity and it makes perfect sense. Thank you for this!

@brnne 3 жыл бұрын

Really cool and informative video. Is so great to know and see more people at one place. Your channel helps so much. Right now struggling with heavy fatigue and pain on arms and legs

@imlistening1137 2 жыл бұрын

You guys did a great job explaining this. And you were very entertaining to watch!

@michellesmoot9423 2 жыл бұрын

I was diagnosed at 28. I did the test with you guys and definitely passed. I had my husband do the test as well and when he couldn't do something I though, "oh that's not normal you can't do that". 🤣😂

@the_original_t 2 жыл бұрын

You are all so much fun, whilst educating us at the same time! I loved how you did this. I'm 56 on Sunday and could do all the mobility tests. I have shared this link w/ the rest of my family to find if any of the others are just hyper-mobile or perhaps have a greater issue. Thanks!

@LizaLake 2 жыл бұрын

Thank you so much for putting this video out. I'm in tears seeing how happy, beautiful and purposeful you all are. My daughter and I are pretty sure she has hEDS but none of the doctors or specialist we have seen have gone through these criteria with her. They tell her to bend and stretch things but don't actually go through the whole criteria. They just say even if you do have it it is best not to seek diagnosis because there is no genetic marker, no cure, and it could affect insurability. It is so frustrating because my daughter has suffered pretty much her whole life with a myriad of seemingly random issues that can all be explained (if not cured by) an hEDS diagnosis. When she started learning that there are other people out there like her she said, maybe I'm not crazy, there are other people out there like me and maybe that is why I am here (on earth), to help other kids so they don't have to suffer in the dark like I have. I'm going to show her this video and we'll go through each step, take pictures and share findings with the doctors. Thank you again for your work in this field, educating people, being role models, and demonstrating to people like my daughter that you can make meaning of and overcome these challenging symptoms.

@hannahk1306 10 ай бұрын

It's sad that getting a diagnosis where you live could affect your ability to get medical treatment due to insurance. It's one of the reasons that I'll fight tooth and nail for the NHS: medical decisions are for medical experts and everyone should have equal access to them. I hope your daughter has been able to get her diagnosis and some treatment.

@godsstrongestchild 5 ай бұрын

i love this video and this channel, to me it shows that even though this is a painful disorder and these peoples lives are affected pretty bad by this, they can still find humor and happiness in their conditions. i aspire in my own hEDS to continue to not let it drag me down so much. thank you for the lovely videos you make.

@jinxd3lv205 2 жыл бұрын

Thanks for putting this out there!

@naseerahvj 3 жыл бұрын

It’s really interesting t see how different people are even in one family.

@IzzyKDNA 3 жыл бұрын

totally!

@Commander_ZiN 2 жыл бұрын

Are they all of the same family? I couldn't help thinking of my own family watching this, I'm the only boy with 4 sisters and we've all sat around comparing our strechyness before. Only my youngest sister has been diagnosed with eds, I don't think any doctors knew what it was when I was a kid, they just said growing pains.

@pernillatorro2812 2 жыл бұрын

Thank you for this channel! This video popped up, and I remembered that my little sister was checked for EDS like 15 years ago, but she didn't get the diagnosis because she didn't have very stretchy skin. I realized I could do all of these hypermobile movements. A few moths later now and me and my sister got the diagnosis hEDS, and my mum will probably get it soon as well. We have been trying to find answers to our many symtoms. Now we finally know what is wrong, and hope to get some help. Thank you for your work!

@briannatipton423 11 ай бұрын

I just subscribed!!! I’ve got EDS, POTS, GP, MCAS, and a bunch of other diagnoses. This is great! Thanks 😊

@Taiwankiddo2 2 жыл бұрын

This was awesome! I loved seeing more than one EDS person compared! Great idea!! Not only was it ingesting, but hopefully this will help others diagnosed incorrectly either way to learn about EDS and what it entails.

@user-yv6pp9wy6f 9 ай бұрын

I’ve been going to doctors since my early twenties with joint pain, fatigue, headaches, & all the things hEDS. Basically, I educated my PCP to get a fibromyalgia diagnosis 15 years ago & a couple of years later I discovered that EDS existed. Same PCP diagnosed benign hypermobility syndrome. I bounced from rheumy to pt’s, to neurologists, with no relief ( did more harm, actually). Last year I was excited to see a local rheumatologist on the EDS website, so I made an appointment. He LITERALLY said “your elbows don’t bend enough for EDS”. It wasn’t until I stretched my neck skin that he suggested genetic testing for classical type. Then he suggested pt-with whoever I thought was convenient-no referral to a specialist! I was so disappointed, frustrated, & am now a 51yo with all but about 4 items in this video & a chip on her shoulder 😣

@shelleyross2886 9 ай бұрын

I can relate. To all every bit of what you have been through. I don't even want to pay for insurance any more. I have never heard of this until now. Not one doctor has even mentioned it or looked for it. They were happy to call it fibro and write a prescription for lyrica. I tried to take it and decided it was better to just suffer from "unexplained extreme pain, fatigue and digestive issues "

@Rain_Reign 2 жыл бұрын

Y’all this was so helpful! I’ve spent the last several years trying to figure out what’s going on with me. Today I saw a new rheumatologist and she’s convinced I have HEDS or general hypermobile joint disorder. This is the only video quite like this that I’ve seen, and it confirms in my mind that she might very well be correct. Appreciate you guys!! Hope you’re all doing all well as possible ♥️✨

@lexpope 9 ай бұрын

Thank you for making this video. I’m not sure how it ended up in my thread or what made me watch it but I will forever be grateful that I did. I was diagnosed with hEDS just two days ago finally answering all the questions I’ve been begging for answers to for 42 years. I did all the criteria along with you all then went to the EDS website for a print out of all the criteria and made an appointment with my GP. Had already had so many other things tested for and eliminated so once I showed the criteria it was an immediate yup that’s what you have been suffering with. So now I need to follow up with a cardiologist to make sure it isn’t negatively impacting my heart. Even if it is I will forever be grateful to you all for leading me to the knowledge I needed to move forward.

@Jo-rr2xs 4 ай бұрын

what a great way to educate and yet keep it light hearted! Such a lovely group of people-you cannot watch this video without smiling-THANK YOU and good luck to each and every one of you.

@ashleym1565 3 жыл бұрын

❤️ Great job guys!!! Keep up the hard work!! ❤️

@susiegoulden4528 2 жыл бұрын

Thank you for explaining the testing…being a woman of 59yrs, I used to get teased about my mobility and flexibility during my school years. I can still do most of them 😃

@marymarmande8446 2 жыл бұрын

Same I'm 59 and I've never heard of this before I pass all as well

@audhdcreativity5899 2 жыл бұрын

Thank you! This video was super informative! I love all your comments on how the medical community is dealing with EDS and how you think they need to improve so HEDS is diagnosed and treated properly. I am 50 and on my way to discovering so many things about myself medically- today helped confirm my suspicion of HEDS in myself and perhaps my child. Thank you for the video and the important study/work you are doing!

@kennastanfill4667 2 жыл бұрын

This is such a great video explaining. I was diagnosed 4 years ago age 44. My primary care dr diagnosed me after lots of research and examining and family history. I had issues all my life but when I had 2 cervical disks herniated into my spinal cord absent of injury and I could not heal from the major operation, 3 years later the pieces were put together. Thank you for this.

@thegratefulzebra2126 3 жыл бұрын

This was phenomenal Im so grateful for this channel. I’ll be 50 next year and I have had minimal care. I believe I started having symptoms when I was at least around six years old though I was not diagnosed until I was 41 1/2 in January 2014 and even now I have no doctors who understand or have any real clue as to what to do with me most of them just wash their hands of me immediately. I do have a pain management doctor thank goodness but other than that I have nothing. And I have three adult children all who have it two of them pretty severely and one who is now just starting to get it where its negatively affecting her life and she is 32. But it is so hard having no doctors who truly understand the disease itself which makes it very hard to explain to friends and family who don’t understand how all encompassing it is but your channel is so helpful so thank you so much for all of your help more than I can say. Doctors told me from 25 on that I was just depressed and loaded me with pills which was not at all the case. I have severe PTSD now going to Drs and my children all hate drs seeing what I went through to get help even though like the young man in the video Ive had cervical and lumbar surgeries and desperately need shoulder and knee as well. Thank you again. EDIT: Sorry that this is all over the place Ive had a very rough several days and Im using my phone to write this and at my age its hard to see the small writing 🤣🤣🤣

@trish5111 3 жыл бұрын

I feel for you and understand your pain. It is very common especially for women, to be dismissed and disbelieved. It has happened to me numerous times. I was branded a 'malingerer' and was bankrupted fighting for a fair payout after I developed chronic neck pain from bad ergonomics that my boss ignored for months - in spite of my numerous complaints. If I had known I had EDS I could have probably avoided the injury because I would have been more aware of me being more susceptible than others. Most doctors are arrogant and incompetent, in my experience. They just had a good memory and passed exams. Doesn't make them as smart or competent as they think they are and they are held up as all knowing when so many are worse than useless !

@Laundrey1 3 жыл бұрын

I also was diagnosed at 41. I was diagnosed in March of this year.

@Catlily5 3 жыл бұрын

I am 46 but the doctors told me I probably have h-eds but there is no point in diagnosing me with it.

@Laundrey1 3 жыл бұрын

@@Catlily5 I’m so sorry. I hate it when they say that.

@thegratefulzebra2126 3 жыл бұрын

@@trish5111 oh my gosh I agree with you on all of this EVERY POINT! Im so sorry you have had to deal with this kind of crap as well. In my experience with the thousands of doctors appts and doctors Ive seen they are entirely arrogant and self absorbed. They do not want to hear anything they will literally talk over me as Im trying to tell them about documented EDS research. They certainly don’t want to learn especially from some “silly woman” who they think knows nothing about anything (dont I know they are the experts and went to Medical School). The truth is that I’m a million times more educated than any of them when it comes to EDS and i have extra incentive since all my kids have it and 2 suffer greatly. Thank you for taking the time to respond. I truly appreciate it. Sending you strength and healing!

@roselisesullivanbarrett 2 жыл бұрын

I feel like finger prints and struggling with digital fingerprint reading could be on the diagnostic criteria as well. My friends and associates who’ve gotten together and share our experiences with H-EDS struggle regularly or at least periodically with fingerprint scanners or fingerprint identification on a lot of devices due to the velvety+hypotension aspects of our skin attributed to EDS. For me it depends on the humidity as the extra moisture and oil can assist somewhat and make it a little more reliable but even then I can’t use fingerprint identification on devices that aren’t mine/used to my finger with its unidentifiable fingerprint. I have a friend who’s workplace has fingerprint and hand scanning for door access and she requires a coworker to accompany her because it just won’t read or authenticate her fingerprints or hand. This is a shared experience enough from my observation that I feel like perhaps it should be looked into with diagnostics as I don’t know of other disorders which cause this

@jessn.3851 2 жыл бұрын

Have you tried breathing onto your finger to give it moisture? When my hands are too dry my fingers don't scan properly.

@melissafarrugia9531 5 ай бұрын

Wow! Someone close to me, had fingerprints taken years ago, and it was extremely difficult to get prints, thanks for mentioning this,

@megang1712 Жыл бұрын

This is the most informative video I have seen yet, thank you 🙏🏻

@santacruzskirts Жыл бұрын

I’m 67! I love love love you all! What was a fun party trick is crippling me. Thank you♥️ for putting this video out there!

@DraconiaFyre13 2 жыл бұрын

This video randomly popped up in my feed. Out of curiosity I followed along with everything and answered all the questions and physical tests and it explains so so much about what I've been dealing with my entire life. I need to take this to my PCP and get officially tested for H-EDS. Thank you for putting this together.

@segwrites Жыл бұрын

As a hEDS’r, just watching the thumb stretches “hurt”… I had surgery 7 months ago to internally reattach my right thumb, and am currently recovering from the left thumb’s surgery 4 weeks ago. Careful, all! ❤😢

@LivingBreadHomestead 2 жыл бұрын

This was excellent. Thx for sharing!. Love ya'lls great attitude!

@Dbb27 9 ай бұрын

I clicked on this because I didn’t know what it was, but you were all so engaging I watched the whole video. Great presentation.

@zoewang9651 Жыл бұрын

Omg I did the test with you guys and literally cried when I finished it and heard all of you guys said yes to chronic pain. It is the day I find out why I have so many symptoms more and more severe now. And it is the day I know I there is a community out there going through the same things. A life changing day I would say.

@c.r1392 11 ай бұрын

I am right there with you! I have almost all of the symptoms that they demonstrate. I also have issues with my joints popping out and back in. When I was little, my hip would pop and I would cry and try to move it back. It still happens!! I would even ask my mom if it was normal to hurt and everyone just thought I was growing. 😢

@hannahsolo27 2 жыл бұрын

I love this, thank you! I am about to turn 30 and only just found out about EDS the other day. Up until now, I thought my chronic joint pain was normal (it's amazing what we can make ourselves believe, isn't it?) and I tick off almost all the criteria for EDS. I have requested an appointment to get checked out and, I assume, diagnosed!

@malindarayallen 9 ай бұрын

Thank you for making the distinction between EDS and common hypermobility! It's really important! 😊

@dineo8341 2 жыл бұрын

thanks for this video! i did the testing again in 2017 myself when the new criteria came out and it was beneficial for me to do it from the perspective of already knowing i have eds. it really reinforced how easy diagnosis can be once someone has a baseline of knowledge about it. i did it with my family, and it was interesting to see where we all fell on the spectrum; this video of multiple edsers taking the test reminded me of that moment, but i was comparing myself to relatives who don't have it or have borderline symptoms. i have to admit i skipped much of the video because it "hurts" to see others hyperextend as it reminds me of the pain i get when i do, but i really enjoyed the discussion you all had at the end, and hearing from you all as you have both a personal and professional connection to eds. my pediatrician was the first dr to connect all of my connective tissue issues and suspect that i could have eds at age 16. after that, the internet has been my best dr, and i can see in the comments how many people you're helping by spreading this awareness! i am currently trying to find an adult pcp who is eds-informed and can help manage my health, as i'm sure you are familiar with the issue of turning to numerous specialists for various different issues and being told they don't know what to do or don't treat that issue. comprehensive care is so important as comorbidities don't occur in isolation, and i so wish that was more prevalent in medical care as you all noted.

@heathermarchese4371 3 жыл бұрын

Last year, a rheumatologist said I had “benign hypermobility disorder” and that he couldn’t definitively diagnose hEDS because he couldn’t get a good look at my scars. Then I went back to my PCP and she totally downplayed it and said one doctor will call symptoms hEDS and another will call it fibromyalgia. A new rheumatologist said he didn’t believe I had hEDS but that it didn’t matter what he thought and again, labeled it fibromyalgia even though I don’t have the typical fibromyalgia trigger point pain. It’s so frustrating!

@theresatrimble7259 3 жыл бұрын

Neurologist diagnosed me. Now I'm off to a genentics dr.

@heathermarchese4371 2 жыл бұрын

@@theresatrimble7259 maybe that needs to be my next stop! I had a follow-up with my rheumatologist today. Stood my ground and asked to have hEDS put in my chart or have him run through the diagnostic criteria and prove me wrong. He refused and then discharged me as his patient.

@theresatrimble7259 2 жыл бұрын

@@heathermarchese4371 its gonna be a battle . He has decided to not make it a clinical diagnosis. 😡 What is this game .I'm 64 been batteling this for 11 years. Don't say it and give me info then not satnd behind what ya said. But I'm not gonna give up . Im just not.

@heathermarchese4371 2 жыл бұрын

@@theresatrimble7259 omg that’s awful!

@patduffyforever 2 жыл бұрын

Chiropractor scored me 6 as a 51 yr old and sent me to gp. Gp sent to spine specialist, he looked at my elbows which go way past and knees and can put hands on floor when bending. Cant bend thumbs or little fingers and he said I scored 1 and discounted it. Have stomach and lung issues, muscle spasms. Had popped a hip out 5 yrs ago. Am really worried as feel I don't have long left and now have this dr who is not a specialist in hyper mobility discounting it all.

@mndpls Жыл бұрын

Went through this with y'all and I passed - I've been suspecting this for years now, but so many doctors that I've seen have been absolutely clueless. My primary sent me to the Rheumatologist and they diagnosed me with pre-Lupus. The same primary that said 'yeah maybe' when I told her I was suspecting it and gave her my reasonings. Some doctors are insane.

@plant_12 Жыл бұрын

Same lol, I always get quick checked but since I can't touch the floor they discard it immediately

@pippadawg7037 7 ай бұрын

@@plant_12 That is crazy because I don't have it and when I was pregnant I hurt my knee (I do pass the knee test/but everyone passes some of them) and because I couldn't bend my leg I couldn't put on my shoes or tie them. So I kept trying to get there as I hated being pregnant and barefoot- literally.. Within a month, I could touch the floor with both hands and I was 9 months pregnant. And they dismiss you because of that one sign? I hope you find a better doctor.

@heathernotzdaniels6350 9 ай бұрын

This was awesome to see. I was diagnosed in my early 40's by a vein specialist, who has transitioned to diagnosing lipedema in women, who tend to show signs of hEDS in the majority of the cases. I had no idea about the scars! That was really neat to see that y'all have scars like me! I didn't know that was a thing. It is a challenge when it comes to doctors, and I can only hope they will continue to learn and acquire knowledge about things like hEDS. I'm also autoimmune and have been since I was about 3 years old, when I started to show signs of vitiligo. As I got older, more and more issues have compounded, I have RA, I've dealt with IBS for years, I've had women's health issues, including a huge amount of adhesions inside my gut after surgeries. It's amazing how many other comorbidities combine in many cases.

@heatherhowerton9172 2 жыл бұрын

Thank you for this video. I’ve had these hyper mobility issues for years and I’ve recently been diagnosed with RA, but have suffered from pain and spine issues for 20 years. I’m going to talk to my Rheumatologist about this at my next appointment! This just answers so many questions for me!!

@racheledang Жыл бұрын

I’m so glad y’all made this video! I was recently evaluated for hEDS by my geneticist, and I’m pretty sure she didn’t check for soft/doughy skin, narrow palate, or Strindberg thumb correctly 😭 leaving me 1 question away from passing the criteria

@nessycupcakes1225 3 жыл бұрын

Ahh this is such a cool video!! I finally got to see a geneticist this week and I'm getting genetic testing done 🥳 they said I'm definitely Hypermobile though 😬 goes us flexi folk

@funkehfunkeh 9 ай бұрын

Did not even know about EDS, unlikely to have it (although slightly hypermobile, I passed most of the 1st section), but watched this just for fun. Great video! It's nice to see a group of friends just talk and interact about your shared experiences.

@pesa9518 7 ай бұрын

I work as an occupation therapist. I found this so helpful as a clear way to check and see if a child with hypermobility should be referred to a doctor for further evaluation. Thank you!

@Creepovision Жыл бұрын

Wow, how did the rheumatologists miss this in me? They just said hypermobility. I also have MCAS, and likely POTS. I am looking forward to these conditions being united as a single disorder by the medical community, because we are all coming to diagnosis of all three from one of those disorders. I've spoken to two immunologists in Melbourne who said they're doing research on the triad.

@chloer2883 9 ай бұрын

I have the same trio. It sucks trying to get treated in the US. MCAS is what I have e the most issues with

@DECDEC1220 9 ай бұрын

Have you had yours your entire life or did it pop up recently?

@chloer2883 9 ай бұрын

@DECDEC1220 I've had it my whole life for sure BUT it started getting worse at 24 then again at 26. Then by the time I was 30 the mcas is the worst thing I deal with. The pots seems to piggyback on the mcas

@ellajaynes2159 3 жыл бұрын

I really enjoyed this. Thanks to all for participating! Can’t wait for the next one.

@IzzyKDNA 3 жыл бұрын

So glad!

@noctoi 2 жыл бұрын

Thank you for this! It's so helpful to see the range of what constitutes meeting the diagnostic criteria. For example the skin stretch test. I've had a couple of GP's say that I "can't have it because my skin isn't stretchy enough" and they just pinch the top of my arm. Seeing the other pinch points has given me a way to illustrate that I DO meet that criteria, just not from the top of my forearm. It's super helpful. Thanks :)

@delphipsmith5724 9 ай бұрын

I love how energetic and positive these kids are :)

@jenniferharter 3 жыл бұрын

This is such an amazing video! I wish all doctors had to watch something like this! I feel like hEDS is one of those conditions where I'm constantly doubting myself and my own diagnosis because of how differently everyone with the disorder presents. So, thank you!!

@blindknitter 9 ай бұрын

I am 52 and just diagnosed. Thanks for this video.

@catalaya3530 Жыл бұрын

This was fascinating! Thanks for all the information!

@dreca 10 ай бұрын

I know this video is old now, but thank you for helping me not feel crazy. My pcp refuses to test for it and tried to tell me, that the only test they could do was by taking a biopsy of my tendon. I’m happy to learn there are other ways. And I definitely passed almost every test you guys did.

@bakerwannabe4435 10 ай бұрын

If your Dr refuses to do possible tests, have you considered getting another Dr?

@dreca 10 ай бұрын

@@bakerwannabe4435 Yes, but I’m afraid most of the doctor’s offices I have spoken with don’t test for it. The closest Dr. I found, that will test for it, is 3hrs away in a different state.

@alona270 3 жыл бұрын

Hahahaha that was a great video! Maybe if it’s possible you guys do also what are the common stuff that is hurting you /bothering you on the day to day basis

@jutta3378 Жыл бұрын

Great video! It's brilliant to see the test done by people who have this condition. The foot test really shocked me - like Roman I also never knew I had these little bumps on my heels - OMG I was amazed!!! Thanks for doing this excellent video.

@liannemarie2504 11 ай бұрын

I just found about about EDS a few months ago. I passed all these tests.....i used to show people how flexible i was because it freaked them out, lol. I was also just diagnosed with fibromyalgia. I have an appointment with my GP in about two weeks and ill be bringing this to show her

@FacesByChelseaK 2 жыл бұрын

Thank you for this! I have an appointment with a rheumatologist coming up, and suspect I may have hypermobile EDS. This helped ease some of my anxiety about the criteria (I meet most of them,) and how to talk about it with the doctor. I was diagnosed with fibromyalgia at 19, but have felt like there’s more going on for a while. (I’m 36 now.)

@slkjaklmk 10 ай бұрын

So interesting! When I attended massage school in 99 I created my own massage techniques because my fingertips hyperextend. As a result my work is a combination of myofacial and my own creations which has made me extremely popular because of my unique approach that works quite well. Today you have shown me my hands are extremely hyper mobile although the rest of my body is normal. I’m so glad I recognized back then that a normal approach to my chosen profession would have caused some serious arthritis and a short lived career.

@nicole43216h Жыл бұрын

This video was so beyond helpful to me. Thank you.

@soledadcallo4119 2 жыл бұрын

I have thought that I had hEDs since I was about 13 but didn't meet the criteria by literally 1 point, so I just settled on what my doctors always mentioned, HSD or benign joint hypermobility. But I didn't realize until I watched you guys demonstrate and tried it for myself that I actually have papules in my heels. I might actually try again to get a proper diagnosis after giving up for so many years, thank you

@Hyenalowena 9 ай бұрын

An interesting thing that my college art life drawing/anatomy professor taught me: hyperextension in the elbows is much more likely to happen in females than males, so it's not terribly surprising that he wasn't able to do it in this video! It was something that came up in class because we were discussing the many ways that bodies vary and how to actually pay attention to the shapes and poses you see, not what you *assume* you see or what is assumed to be "correct" or "normal." My elbows can hyperextend backward a LOT and it was always something that made me self conscious because people would always point it out but hearing that from the professor did a lot to make it feel more normalized

@emese-tundetorok1135 Жыл бұрын

It can be a painful deal. Never been diagnosed, I got "you have some genetic disorder" i went to an orthopedic doctor. And that was it. 🥺 I live with it as good I can. Kinesiology tape helps a lot.

@karenthomas5624 9 ай бұрын

Oh my goodness, kinesiology tape has saved me so much pain.

@chaemoorman98 2 ай бұрын

Thank you so much for this video. I have a family member facing the same HEDS . You have spoken on everything that they experienced. Day to day is difficult !

@Squabetty 2 жыл бұрын

Fantastic Video! Very real, very eye opening. I think the insertion after the hyperflexibility a rather hyper mobility piece was a really good addition to remind people that EDS is much more than just hyper mobility. You all appear to me as bright members of the younger generation who are doing great work towards public good and contributing to the medical field and public information about important conditions. Keep uP the great public connection!

@IzzyKDNA 2 жыл бұрын

❤️❤️

@thenameslauren55 Жыл бұрын

i was diagnosed with MCAS this year and i'm in the process of being diagnosed with POTS and i am also pretty certain I have some sort of connective tissue disorder. I've barely gotten doctors to listen to me about the heart symptoms and MCAS, so I've been reluctant to mention my symptoms. I appreciate this video, it was very helpful, and I will ask for testing for connective tissue disorders soon. take care everyone

@averyhappywoman Ай бұрын

So grateful for this. I am 42 and just finding out 😮 It answers so many questions.

@mariposavioleta9007 9 ай бұрын

I only heard of EDS about 2yrs ago and about to go through the testing in a month from my primary care provider before the specialist will consider taking me on. I've experienced these symptoms since I was a young child (now in my 40s) but never was taken seriously by previous doctors I had and very gaslit by others in the past for my symptoms. Thankful to even havean appointment coming next month to officially do the testing. My last appointment I definitely passed the beighton score but having POTS I couldn't do the touch the floor as even laying down really increased my cardiac symptoms. This video came up as a suggestion and I'm now subscribed. From this video I passed more than enough to get an EDS diagnosis but we'll see what happens when I get the official testing done. Here in Canada the criteria does allow for something like POTS to be added into criteria to help with diagnosis. Honestly nervous about having to go to the specialist which is a 4hr drive just to get to the city where it's located especially considering I go into a flare just from regular appointments or travel of less than 1hr. Thank you for this video it helps me to not be nervous about the actual testing just because I have a better idea of what to expect.

@atlasjames2993 3 жыл бұрын

Interesting video as it's nice to see the degrees in various people. However, I would love to see the difference among people of all ages and not just those in their 20s. Those who get stiffer and tighten up from keeping their body upright for decades would be a better comparison.

@symbolistartist 2 жыл бұрын

I’m 56 and not much different from how I was 20 years ago when I started to collapse from exhaustion, but I keep up the momentum by exercising every day. I avoid most of the party tricks and I’m sure it has helped me stay relatively stable.