hEDS, HSD, Hypermobility differences | Is HYPERMOBILITY NORMAL?

Where do you fall on the joint hypermobility spectrum? In this video, I go into detail on what types of hypermobility are normal and which types are classified as HSD and hEDS (ehlers danlos syndrome).
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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
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.

[@digomanda]

You've explained this better than most online medical and otherwise information. Thank you!

[@NikitaUnique]

I was recently (finally!) diagnosed with G-HSD because I didn’t quite pass the criteria for H-EDS. However, I have joint hypermobility in sooo many more joints than Beighton addresses, I have orthostatic hypotension, IBS, Raynaud’s, easy bruising, constant headaches, muscle pain, joint pain, subluxations, nerve pain, problems with my eyes, easily injured...autoimmune issues...the list goes on and on. My guess is I probably do have H-EDS, but I guess I’ll just have to wait and see if they ever find the gene(s) responsible. The results and “treatment” are the same anyway. I’ve been dealing with these symptoms for over 20 years. Just have to keep taking it one day at a time! ❤️

[@IzzyKDNA]

As long as doctors take it as seriously like they should, then G-HSD diagnosis should be just as good!!

[@lilyoh5780]

May I ask what kind of doctor diagnosed you?

[@Lovescoffeeandtea]

What is the treatment? My daughter has this.

[@NikitaUnique]

@@lilyoh5780 : So sorry; I just saw this! I was diagnosed by a Geneticist, but my physical therapist thinks I was likely diagnosed incorrectly and actually have hEDS. Treatment is the same, so it doesn’t really matter in the long run, unless, of course, certain diagnostic codes make a difference in medical coverage.

[@NikitaUnique]

@@Lovescoffeeandtea : Treatment is really dependent on an individual’s specific symptoms. This disorder affects people in such varied ways. But, in general, it’s all about managing pain, injuries, joint instability. For me, that equals custom physical therapy that looks at the whole body, how everything interconnects, and coming up with modifiable exercises specifically for my varied needs that I can continue at home for the long run. My connective tissue issues affect everything from joints, muscle, and nerves to my digestive system, skin, and who knows what else. (I also have co-morbid health issues that can overlap symptom-wise, so knowing which thing(s) is causing which symptom(s) can be….frustrating.) For me, it’s about listening to my body and making modifications accordingly. I don’t like meds because 1) I don’t want to become reliant on them and 2) I get most of the side effects and few of the benefits, so I depend more on diet and environmental changes. But it really depends on the severity of your symptoms, too. For some people, their mobility is greatly reduced, or it can be on some days and not as much on others. Some are so severe that they are on feeding tubes, though I think that happens more with classical than hEDS…but everyone is different. Finding a medical team that you and your daughter trust, who listen and are willing to learn, is essential. I was in my late 30s when I was finally diagnosed, and that’s when ALLLLLL the varied, weird, and seemingly unconnected health issues made a lot more sense! Best wishes and good health to you and your daughter! 🙏🏻

[@kittenthemitten718]

The symptoms of EDS connect everything I have ever gone through

[@Beth1342]

Just to point out there are those of us who have crap docs around. Been diagnosed with BJHS(now HSD) because the doctors are still confused :(. But otherwise, his is an excellent video and thank you for taking the time.

[@Glittergirl87]

I was diagnosed today with HSD. I thought I’d be relieved but I’m extremely sad.

[@hewnenthusiasm4059]

You're not alone the HSD diagnosis broke me, I feel like no one takes me seriously!

[@therealdeal3672]

If a doctor asked me to hyperextend my knee, even though it was common when I was a kid, I wouldn't do it now. When I was 10 years old I studied Aikido and I was taught how to properly use my knees and not hyperextend them as well as my elbows. Practicing martial arts probably helped build up the strength in my knees to keep them from acting all wiggly like they had been before. Hyperextending your joints damages them so, I don't even care if a doctor asked me to do it. I know I could hyper extend it and I know it's bad for it.

[@hewnenthusiasm4059]

@@therealdeal3672 omg I used to do aikido too! Every thing is hypermobile for me tho 😂

[@stephelisabeth3143]

I think I probably have some form of HSD. I have TMJ/D, crazy flat feet and plantar fasciitis, popping and clicking noises in joints all over my body, soft skin that bruises easily (and inexplicably, I never know where they came from) and makes me look like a teenager. Plus, I’m diagnosed with CFS and fibromyalgia which I now think are symptoms of something else. I don’t think I’d quite qualify for EDS though. It’s amazing that it took 27 years of my life for some of this to start making some sense. I really hope I can see a rheumatologist soon.

[@thatweirdscienceguy9880]

I feel like you could be a teacher (...or maybe a doctor). I was recently diagnosed with Ehlers-Danlos Syndrome (Hypermobile) and it's crazy how much information is out there... and how much you know.

[@thatweirdscienceguy9880]

Just curious, what are you studying in college?

[@IzzyKDNA]

lol thank you! yeah i've done SOOOO much research and read too many studies 😂. Medicine interests me so much!! I study Environmental Earth Science! I'm either going to go into env science or maybe be a doc or a genetic counselor

[@alientree3693]

same I was just diagnosed like a month ago

[@carielynn3609]

Izzy Kornblau genetic counselor and find a cure!! Lol

[@amber3574]

Stone Johnson Vlogs I know right! I keep trying to nominate her for a Ted talk lol. I know she’d be amazing at it! This girl literally saved my life with her videos. I’m sooo grateful!

[@KaityJane1995]

I just got diagnosed with hEDS/HSD and disautonomia today... I would probably never have gotten diagnosed without you! I had never heard of this before you, and I had given up on getting a diagnosis and doctor's had just ended up saying it was just stress..... After seeing your videos I went to the doctor and requested to be sent to a rhumatologist.. and he said he's sure I have it and that I have disautonomia as well! I'm so happy to finally have an answer,..and be able to start treating the cause of my nausea and pain, so thank you so so much,..I thought I'd never have an answer for nearly an A4 page of symptoms!

[@katiemarie8619]

I have hEDS like HSD. I suffer with hypermobility in every joint, I have POTs, constant headaches, a heart condition and other things. My geneticist told me that i more than likely have hEDS but there is not currently a test for it where I live (i'm from england). I don't quite fit the whole criteria because I don't really suffer with my stomach (stomach pains and occasional bloating but that's it) and apparently my facial features don't fit that of someone with eds. It's a bit annoying and I know label won't really change what I suffer from, however, some people don't really take it seriously. You say hypermobility and they think "double jointed" but it's so much more than that! Your video is so informative and well done to you because it helps bring about awareness of hEDS and the seriousness off it!

[@Citrusverbena]

I've not heard about facial features that accompany hEDS. Can you explain that? thanks

[@katiemarie8619]

@@Citrusverbena it's not necessarily heds, but eds in general. It's big eyes, thin nose and thin lips. I think that's normally with vascular type but my rheumatologist goes by that criteria for all

[@rebeccawilliams139]

I’m in England and you can be diagnosed with hEDS here, it’s just that a lot of doctors are generally uninformed.

[@Emilyweasel2023]

Rebecca Williams also from England diagnosed with hEDS

[@CodyPeacecraft]

Those things you are talking about are more in line with Marfan’s syndrome than EDS. The stomach and digestive issues aren’t diagnostic criteria but a possible symptom of the disease. As for the testing, there is NO Genetic test anywhere for hEDS anywhere as of yet. I believe your doc was terribly misinformed. I should know, my last primary care doc (hence the reason she was dropped as my doctor!) was because she thought it only effected one side of the face and caused no pain! No! You are a moron that’s Bell’s Palsy! There are too many doctors that are woefully lacking in information about a disease that is as prevalent as this one there are at least 2,000,000 people who have it!

[@andreawisner7358]

You are a brilliant young woman. I guess you're on your way to being a brilliant doctor!

[@The123zoe456]

I have HEDs and for the majority of my life I was clumped with the common hypermobile folk, and cause it still says that on my history of having HM not HEDs even tho it's confirmed by docs I've never been taken seriously 😭

[@jkell2888]

As a person who has been confirmed with hEDS twice by separate geneticists: thank you for making this video!! I was diagnosed twice and I still didn’t quite understand the spectrum fully or why it’s all like this. I’m participating in research soon at the Carle clinic in Illinois. Thank you so much for explaining all this. I’ve been dealing with this since my early teens and it’s all so confusing lol

[@junkoe119]

I was diagnosed as a child. Went to a new doctor and he said I didn’t have it because I couldn’t hyper extend my knees even though I still pass all criteria the same as an adult.

[@ummidk9676]

could it have changed because of the change in criteria?

[@caavalca]

if you don’t pass the beighton score bcus you can’t hyperextend your knees that could make sense but in any other context it doesn’t😭😭like you can have a couple joints which aren’t crazy hyper mobile and still have EDS, especially if you pass the beighton score without having hyper mobile knees

[@hollibunz5860]

Hello, I came across your videos and think they are great. My 17 year old daughter was just diagnosed with hypermobility, EDS, Potts, and fibromyalgia. We are so excited about her getting diagnosed because for the last 5 years, she was told by several doctors that she was just lazy, didn't want to go to gym class, she would out grow the pain, and there was nothing wrong with her. So, now we have been told to see this doctor or that doctor. We keep getting told there is nothing we can do for pain and that she needs to keep going to PT. There are times her pain is so severe that her Dad has to carry her around the house. Its very frustrating because it seems like the doctors diagnosed her, but now, not wanting to help with pain. She misses work and school. I'm looking for some advice and direction- any info will help. Thank you!

[@darlarohde1010]

Holli Bunz if she was diagnosed with EDS she needs to go to a Rheumatologist that knows EDS. Most treatment will be what her issues are. Joints (physical therapist for EDS) stomach problems (gastroenterologist for EDS) dizzy or fainting dysautonomia POTs cardiologists) pain (pain management Dr specializing in EDS. Hope this is helpful and hope your daughter gets the help she needs! Much love xo💜

[@Soph149]

Hiya! I’m not 25, and I’ve been diagnosed with Benign Joint Hypermobility Syndrome since I was 8 (bit of course more recently it’s been changed to a spectrum disorder). More recently I was diagnosed with Fibromyalgia. I also suffer with really severe pain, exhaustion and low mood and always have. I went to a rheumatologist who was fantastic. I use a mixture of pain medication, physio activities and supplements to help. But the rheumatologist totally got that I suffer despite looking completely normal. He gave me so much information and coping skills and lifestyle changes to implement. Honestly, what gets me through the pain is heat. Hot baths, heat packs, heat rubs etc. Only use ice when there is an injury. Unfortunately, I can’t say it get better, but you can change the way you think about it which really helped me get out of the despair of it all. I have the same issue, because I have a diagnosis and there’s no cure or definitive treatment for managing it, it can seem like you’re passed from pillar to post just trying to get help. Stick at it and definitely try and get a rheumatologist on board. All the best! Good luck ❤️❤️🙏xxx

[@eduardopadilla5505]

I love how you still smile despite everyhing you are going through!😀

[@IzzyKDNA]

Thank you! It brings me joy to educate people on this disorder. I wish I had seen a video like this 10 years ago. :)

[@eduardopadilla5505]

@@IzzyKDNA Yes, very necesary to educate people about all medical topics and about disability, etc. Have an awesome day!

[@Dulcimerist]

I have hEDS, and sometimes people think I'm smiling when I'm actually wincing in pain. :)

[@eduardopadilla5505]

@@Dulcimerist I know what you mean! :) i Have kidney insuficiency. Have an awesome day!

[@klalarae]

Sometimes people who are suffering the most, smile the brightest. Nobody ever realizes how much pain I'm in, because I'm always chipper and laughing. I tell lots of jokes and try to make other people happy. It's a coping mechanism.

[@rosehill9537]

Just diagnosed hypermobilty (didnt get told a letter) with secondary fibromyalgia had joint pain and stomach issues all my life. Now in my 30s trying to learn as much as I can as my kids have joint issues and stomach issues. This has been so so so so helpful thank you so much!!

[@radixdudette]

Izzy, it is such a pleasure to listen to your clear, vulnerable didactic explanations. You have a bright future as a compassionate advocate .

[@aritrueswell7841]

Thank you for making this! I have symptomatic generalized HSD but have been wondering if I might actually have EDS. You did such a good job explaining how my condition and EDS have so much overlap and it's nice to know that I'm not the only one with no idea which one they have

[@mystripedlifetori2280]

So almost six months ago one of my occupational therapist asked me if I had EDS I inquired about it and did some research then ask a doctor who sent me to an orthopedic specialist to have my hypermobility looked at who has now said that I require genetic testing for ehlers-danlos syndrome had it not been for the education that I have learned from watching your videos I probably would not have pursued it thank you so much for sharing your story and educating us all we've been looking for answers for years and tested for all sorts of things for each separate issue never finding something like this it could connect all the health issues

[@IzzyKDNA]

I'm so glad to hear this!!!

[@annaburgess5589]

As always I loved your video Izzy and appreciate the information! This was so helpful 😊❤️

[@mismatchmim]

This finally cleared this topic up after over a year of research so thank you!! You do such great content for such underrepresented experiences!

[@tarp11z]

Thank you for being so generous with your knowledge. Truly. I wish our medical system was half as clear on anything, ever.

[@IzzyKDNA]

❤️🧡💛

[@ElizabethDohertyThomas]

Best video/info on EDS I've found! Still a bit confused, but you give me a lot more concrete things to think about.

[@lillyrose3545]

These videos are packed with easily digestible information. Thank you so much for these videos!

[@ElishaEhrhardtModifiedTease]

Thank you for your commitment to correct information sharing. I feel like I might cry from relief to have found your channel.

[@astridmyst]

I just want to say thank you so much for making these videos! I actually discovered your channel randomly off of a general interest to learn. Now it is possible I have EDS so I am binging all of your videos even more to learn! Still going through the process of doctor appointments and testing is very stressful while in pain and not knowing what is going on. These videos are going to help me learn and understand more for the next appointments!

[@katrinaoliver5680]

This feels like such a validating explanation for me 🥺

[@nunyabusiness6450]

This video was so helpful. I'm pursuing a diagnosis because everyone in our family has generalized hypermobility, easy bruising, 1 or more dislocations (I only had one through sheer luck and caution), and so on. Felt that EDS was a bit too extreme after hearing the stories of people who dislocated their shoulders being swung as a kid, and dislocated their ankles because the jean cuffs were too tight(though I know it's a spectrum and symptoms can vary in severity). I'm still going to bring up EDS when I go to a doctor, because a doctor would of course know better than I and I tend to downplay my own symptoms even to myself. But also knowing that you can get help even if it's not necessarily as severe as EDS was a great relief. This channel is amazing, keep up the great work !!

[@brechtjeschwippert4480]

Thank you so much for clarifying the spectrum for me, I'm on the way to finding some kind of diagnosis for my hypermobility and chronic pain and now I feel like I can go to my doctor and explain more of what I think of it. So again thank you so much!! :)

[@alexmyoga2760]

Thank you for explaining this so incredibly well!! Been trying to figure out my chronic joint pain for years and I’m amazed no doctors have ever asked or checked my hyper mobility which I have but never thought of, realized I have other symptoms you mentioned as well so thank you, I will now try a different path of investigation with doctors.

[@AlexS-vz7od]

Amazing detail and clarity, thank you! Have you thought of making a video on the connection between CSF leaks and connective tissue disorders? That would be a cool topic as there are lots of people with CSF leaks who have questions about connective tissue and probably vice versa. I've had a CSF leak for many years and just starting to explore the CT world. Happy to point you to CSF leak resources if you need. Thanks again for all your work!

[@EmD93]

I have hEDS like HSD (G-HSD) as you described it. I’m glad you’re talking about it because people don’t take me so seriously as someone with EDS.

[@melonie42O]

This was a great explanation. It is such a complex disorder, I would love to see them find the gene that causes heds. It would simplify things so much. I know for me I am still struggling to find a place that can test me to confirm if I have eds or just hsd. The only thing they confirm is hypermobile joints, but I do have a lot of the comorbid conditions too.

[@ZoeyVagnerLLF]

going in for my diagnosis once school is out in May. I match 70-100% of the criteria in each section except for family history because I jsut dont know. Now that i have chronic pain especially in the SI joint, knees, feet, neck, shoulders, and chronic bloating and diegestive issues caused by anything i eat, etc its time. thanks for your videos.

[@christiana1718]

Thank you for making this video! I definitely understand the difference between the two better now(especially that one is not necessarily more sever than the other)! I was diagnosed with G-HSD recently and was basically told that I don't quite meet the hEDS criteria because I don't have stretchy and fragile skin. But I was also told that even if I did get diagnosed with hEDS my treatment would largely be the same. So everything you said definitely makes a lot sense!

[@svt74]

Great explanation. Thanks for clarifying. Especially that last little PS at the en. 😊 I was recently diagnosed with HSD but have severe gastrointestinal problems, anxiety disorder, migraine, sleeping disorder, pots. I have also suffered from fatigue and burnout for many years and am about to make a Neuro psychiatric evaluation.. So yes as a HSD person you can definitely have as bad symptoms as hEDS. Keep up the good work!

[@lynnette3020]

I have EDS, HEDS, VEDS, Fibromyalgia which the Dr said takes on MS symptoms, Pots, PTSD, Anxiety, Gastroparesis, OA, Disc Degeneration of my spine. Thank you for educating the public about eds

[@bigchungus1924]

Very educative! Thanks pretty lady 💋

[@malinichandra6953]

Thanku for explaining this so well. It’s so hard to explain to family and friends the problem I have - and why I can’t do certain activities at sometimes and how it can flare up and won’t go away with just a pain medicine

[@mandichism2347]

This! Oh my word thank you.. HEDS diagnosed and learning about it ... Odd seeing as how after all along have adapted as well as possible

[@ElizabethYanes14]

I'm currently seeking a diagnosis for hEDS. It runs in my family (several relatives have it) and my hypermobility has been getting much worse and more painful over the last few years, along with other concerning symptoms. Thank you for the great info and encouraging words 💜

[@capucine3267]

Great video! They really should update the criteria to include more relevant symptoms of EDS.

[@bobbiesued6186]

You explained the hypermobility issue so well. This video definitely helped me understand more as I have strongly suspected hEDS for 2 years. Thank you!!!

[@IzzyKDNA]

Thanks so much! I'm glad it could help you understand more

[@Larissa_aus]

THIS was SUPER helpful. I needed a comprehensive explanation of the differences between hypermobility, Hypermobility Disorder Syndrome and Hypermobile Ehlers Danilo's Syndrome. I amd either HDS- likely hEDS or hEDS. I am DEF hypermobile as diagnosed by a rheumatologist in 2016. The new criteria as explained in another video with your cohorts was enlightening. I also had no idea that this was so rare as most of my family is the same and it's our normal. Thank you. Please keep spreading awareness and sharing education for those who can't get to formal diagnosis. 💜🦓💜

[@susanneanderson1235]

I finally saw the Genetic doc and I put the details under another one of your videos. I only met 2 out of 6 for the flexibility. However since I am 53, he said that was probably due to my aging causing stiffness offsetting my flexibility. UGH! He was a real nightmare. My other message goes into detail. Thanks Izzy and God Bless You🙏

[@nancyarmstrong5551]

Diagnosed EDS 56yo.59 now,so I have : stiff joints

[@therealdeal3672]

Izzy, thank you for your very educational video! I started trying to figure out about my hypermobility several years ago. And discovered it really is a thing. Even though I had experienced it my whole life, it was never something anyone talked to me about. I think I have generalized hsd. I have been diagnosed with mitral valve prolapse 25 years ago. Have had some pots experiences. Learned how to avoid hyperextending my knees and elbows when I was 10 years old from studying Aikido. Have almost had my knees go out of joint numerous times when I was sitting cross legged too long. TMJ from neck injury when I was 14. All I have to do to crack my neck is move my head from one side to the other, and all the vertebrae go pop pop pop pop. Currently having significant problems in my right hand. Have no health insurance. American healthcare system is sadly and woefully lacking. High anxiety all my life is another symptom related.

[@emilymetz6638]

Doing a project on this, thanks for breaking it down!

[@bonniemoerdyk9809]

Izzy, you are such a bright young star! Keep teaching others on this disease-syndrome, whichever it is considered. I have gone my entire life wondering why I get sick so often and am in so much more pain than others my age. I even have a friend in her mid 90's now that does far better than me. No doctor has ever told me I have EDS, but after 2 biopsies back in '99-2000, the Dermopathologist said he was sure I had a collagen vascular, connective tissue dis. I've told other doctors that...but they poo-poo it. Everything in my body has prolapsed: uterus, bladder, rectum, Mitral valves, the ligaments completely gave way when I was 4.5 months pregnant and ended up in the E.R. I used to pull the skin from my elbow 4-5 inches away, and could double cross my legs and bend w/ hands flat to floor (alto never could do splits). Plus, all the subluxations..my Chiro said I need to put Elmers glue to hold you in place!, LOL Trouble is ... I'll be 65 in a few days and am SO stiff (I have R.A. too) and can no longer do the things on the EDs test. Why didn't doctors put 2 & 2 together when I asked "what's wrong?" Do I just GIVE UP? p.s. Have new Rheumy Dr. and she had me do those things when I mentioned EDS...of course now I CANT. Dr.s have also thought from Nerve Studies I have a form of ALS...which other Dr.s poo-poo that too!

[@angelalovell5669]

This was really helpful, thank you. Obligatory mini-med - My joint pain started at around 5 and has spread throughout my body for the past 25 years without a diagnosis (until a sweet physio suggested that I was hypermobile, bless... I mean, still no diagnosis but I have a direction!) Point being, I've been dealing with pain without help (or often belief, gross) for so long that I have horrendous trouble with scales and diagnostic criteria. This helped give me some perspective, which is really hard to come by for me - I've been in a pain oubliette and I do not know how to quantify or be comparative about it or even other sensations. It's good of you to take on complex issues like this and provide your perspective and experience. From what I heard and saw, I'm either G-HSD or h-EDS. That's sort of neither here nor there (not expecting you to weigh in, doctor! lol), but you've given me another angle to approach it from with the stubborn, boring, actual doctors :P I have a lot of trouble understanding subluxations, I'm hoping I find a video about it on your channel :)

[@algcful]

Thank you so so much for this informative video! I am about to go to my first rheumatologist appointment and am extremely convinced that I either have HSD or hEDS and this just cleared up some confusion for me. Love your videos!

[@IzzyKDNA]

I'm glad it could make it clear! good luck at your appt!

[@nina-sy2sv]

I always thought I was just hypermobile but you helped me realize that I have hEDS,thank you!❣

[@user-gg6zx7kd6w]

that you may* have eds

[@Hannah591]

You can't diagnose yourself through a KZbin video.

[@Queen_of_Missfit_Island]

Thank you for this! Gentle hugs!

[@crowcalls]

Thank you for the information! I’m definitely hypermobile, especially in the hands. I do have issues with writing (top knuckle of fingers hyperextends) which cause me pain. I think I would still fall under asymptomatic, but it’s useful to know when exploring solutions!

[@vickiswanton5489]

Oh thank god for this. I didn't pass the hEDS criteria because the rheumatologist didn't think my skin matched the criteria - i disagree - (and also, some of my previously very hypermobile joints are starting to stiffen up in my 40s). Thank you for this.

[@elizabethraitanen5057]

Thank you. Great video!

[@Voldycat]

This video is super useful in explaining to people what's going on! So I don't have an official G-HSD (like I was never referred to a rheumatologist or fully investigated) but multiple have doctors have been like 'yere its definitely that'. I was going to ask to be referred to rheumatology but I'm waiting to get some other test results (I have a POTs test and things) before I go so that I can go with as much information as possible to see if it is G-HSD or hEDS. Wish me luck!

[@edithputhie8987]

Thank you so much for making this video! It really helped me understand what’s happening to my body and what some doctors have said. I’ve had multiple subluxations and dislocations on my shoulder, knees, elbows, fingers, etc. But i was always told “you’re just really flexible. Don’t worry about it” or “ you love acting like a freak and you live to get diagnosed with something”. The first time i saw someone talking about hEDS i felt so connected to that person because i had a lot of the same symptoms, so i googled the criteria and i pass it with flying colors. The problem is that where i live (the dominican republic, a small island in the caribbean) people are really close minded and they don’t like considering the possibility that there may be something else wrong with me that’s not just that i’m hypermobile.

[@IzzyKDNA]

I'm sorry to hear it's difficult to get the right diagnosis and treatment where you live. If it means anything, physical therapy can be helpful for many people (though I'm sure you know that), and you can do that where you are. :)

[@Kozickih]

I appreciate this video. Have you ever spent way too much time trying to figure out normal range of motion? Ive been scouring through videos to try and figure out what normal knees look like while doing the beighton score.

[@IzzyKDNA]

yes totally I have tried to figure out normal ROM. sometimes i ask my physical therapist, since they know!

[@livetrueenlighten55]

I'm so glad they renamed benign Hypermobility to something else because before I got diagnosed with hEDS and uninformed doctor who thought Marfans was the only type of eds, told me I have benign Hypermobility and I felt there was nothing benign about it, lol.

[@Youre_Right]

You’re absolutely beautiful. You’re very good at presenting information that’s kind of hard to understand if you have never heard of EDS. So many issues come with EDS. I hope you have the best life possible.

[@IzzyKDNA]

Thanks so much ❤️

[@bloomnights]

When I was diagnosed with G-HSD my genetist said that I didn't have EDS, as of now. She told me that I probably had some form of it (hEDS or other) and that I might be diagnosed with it in the future.

[@rodinaali9467]

Hello they told me exercise or swimming and other sports can help with my back pain so i was just wondering if you know any good exercises that could help me cuz at the current situation i cant go swimming or do any other sports and the pain getting worse thanks.

[@Trash.baby.2004]

Ive always had a naturally very flexible back and all my fingers and thumbs are “double jointed”. My shoulders can move around further than they should. If i reach my right arm over my shoulder and reach my left arm under to grab it i can bring them over my head without letting go. My older sister sat down on the couch and her knee dislocated because she doesn’t have a lot of muscle. My younger sister has dislocated her elbow twice.

[@Softening.into.His.Glory.]

Good breakdown! Obviously, no pun intended. Update from an earlier comment, thanks again for suggesting that I have Classic- like looked at as a possibility(and not just hEDS or vEDS). Naturopath and I agree that it's certainly possible. Just trying to get in to a clinical geneticist, and an orthotist, these days.

[@memesissydollar3080]

Is the Mayo Clinic able to help with any of the illnesses mentioned ? I would love to here of who is some of the Greatest GI Drs in Fl. Can anyone help ?

[@lenaz1178]

Yo I know I’m doing research on why I have insanely flexible joints and ligaments thank you so much literally have dislocated my knee and shoulder within a year

[@deepakdhoni8476]

I have a join pain and crackling sounds comes form my joints.O have a 3 -4 Symptoms of joint hypermobility.I am not sure .....

[@AnnabethHopper]

Could you make a video about how you manage symptoms while in college? I'm only taking two classes and I'm having trouble even keeping up with those because of the fatigue and gastrointestinal symptoms. Strangely enough the joint pain seems to be the easiest thing for me to deal with lol. You seem like you've figured out how to handle some of it. Love your videos!

[@IzzyKDNA]

Yes, I'd love to make a video on this. I'll do it!

[@rowanb2355]

Really helpful, thanks!

[@dollasmr6168]

This was super interesting to me because I just got back from my gastro doctor and looked at my "problem list" of diagnosis sheet. It was marked generalized hypermobility of joints BUT I saw a genetic doctor in Nov 2019 and he said h-EDs so I have no idea why it didn't get added/corrected on my chart. This was really informative and validating. I have to have more surgeries soon for my gastroparesis... some of which I may be able to eat solid food again but as of today she said no more solids only puree because of how bad it is getting with both my Gastro and POTS and I am exhausted but hoping that opening the stomach to intestine opening and removing that part that opens and closes could help however they said more than likely I need a J tube so that the mic key will just STAY in my small intestine and stop flipping into my stomach... Going to call the genetic doctor to clarify but what you said really made since and I wish they would have updated my list because even my gastro doctor today said the h-ED looks like it shut down my whole digestive track. -___-

[@q3st1on19]

Be me: -Have G-HSD -Get chronic widespread pain & chronic fatigue when I'm 10 -Have family history of both G-HSD and hEDS (relatives who have to have their aortas splinted in their teens as they stretched to much) -Bruise easily -Lumpy, weird scarring -Stretchier than normal skin(nothing ridiculous but definitely noticable) -bad coordination -Some other symptoms just can't be bothered writing em all Every doctor and physio just says I have HSD (using what ever name was being used at the time) so when I say that people go, "oh, so ur double jointed, that doesn't cause x" Mfw the naming of the condition is so convoluted that even I struggle to understand it. Nice videos, glad to see people talking about this.

[@amandanewman2676]

I was diagnosed with G-HSD, I have a lot of symptoms relating to hEDS. (dislocations/subluxations, gastrointestinal issues, POTS, soft “ “velvety” skin that scars easy, Floppy valve syndrome.) I’m 16, and don’t have any family that was diagnosed with hEDS (although my moms parents aren’t her biological parents so we have no genetic background there.)

[@clairejeske4438]

Thanks so much for this! Loved this vid as always :) I do a lot of education/like helping people in support groups and facebook groups. I know a lot about EDS - hEDS and other types - because I had many EDS symptoms like atrophic scarring, skin abnormalities, stretch marks, POTS, mast cell activation syndrome, gastroparesis, SIBO, easy bruising and bleeding, etc etc. so I never really looked into Hypermobility spectrum disorders when I was getting diagnosed. I’m currently hEDS but I need genetic testing to rule out classical or classical like. Probably classical like if anything. I’ll let you know in 3 years when the geneticist can finally see me 😂 I wanted to understand more because so many people ask in groups, and it’s so important to address the full spectrum of hyper-mobility. I think it’s so sad when people look down upon or exclude people with symptomatic, systemic hyper-mobility and other symptoms as “less bad” than EDS. This video was awesome and will save my bad tendons lots of typing when I can link it in groups :)

[@IzzyKDNA]

SAME IM ON A 2.5 year waiting list!!!!!!!!

[@clairejeske4438]

Izzy Kornblau it’s crazy like seriously! They don’t even need to really SEE us! Just get our genes tested geeez! An expert already diagnosed me 😪

[@saltydinonuggies1841]

Thank you for correcting yourself so clearly. A lot of people probably would have missed the corrections if you just put them in the comments or description of the other video. Edit: interesting idea here. I might have g-hsd. I dont think i have eds but i meet the criteria in this video for g-hsd. I also need to get tested for POTs and orthostatic hypotension. Nice.... Nice... My body hates me.

[@caitm8209]

Medicine struggles to define syndromes because of their complexity. That's why diagnosis is so difficult to obtain. You have explained all of this so well. I am learning so much about EDS from your channel! I am going to get the beighton test done soon. But Don't really know even IF my doctor has the ability to refer me to anyone who can rule our different types of EDS. So it is such a complicated situation. One step at a time though.

[@neonlatte]

The last bit was interesting. My rheumatologist and GP both believe that I'm a high candidate for hEDS and not just generalized hypermobility due to also having POTS, chronic migraines, Raynaud's, extremely slow digestion, as well as ADHD. However, both of them weren't sure if it was a good choice to be formally diagnosed with hEDS due to concerns about if pre-existing conditions stop being protected, or general question of if there is any value to a formal diagnosis if treatment for both is currently the same. I don't know how common this is but there's another aspect of why some people may have generalized hypermobility disorder in their chart even though they really have hEDS; some doctors don't see the point in getting a concrete diagnosis to differentiate between the two if they're similar enough.

[@emilieheirbaut4365]

The problem is Belgium/Europe is that when you have HDS, you have to pay way more for your physical therapy/ medicine, when you are diagnosed with EDS, your physical therapy sessions etc are almost free

[@RavenTheValkyrie]

Very concearned i have some form of Joint Hypermobility Syndrome. I keep easily spraning fingers including my thumbs. Just bent my middle finger 2nd knuckle backwards today doing almost nothing. Very scared. Thank u for making this video. I feel like im not crazy

[@HaydenHaystackArts]

I have been watching a lot of your videos because they help me break down all the differences in HSD and EDS. My GP told me to study HSD/hEDS, POTS, and the like because I have some almost-clear symptoms of them. They're just not as clear because my tachy is only 145 ish (60-70 resting) and minor orthostatic hypotension! And I don't think I pass the Beighton. We're not sure though if that's because I already eat a lot of salt and do other things that mediate the symptoms. Thanks for the videos! I'm slowly getting through them haha

[@LecheVitrineUK]

Thank you this is really helpful, I have been wondering about H- EDS for myself and my daughter, I'm in the UK and I'm just trying to figure out if I can deal with pushing for assessments. I have had all kinds of issues since being a kid and my daughter had to wear afo's from aged 2 because her feet collapsed inwards and it actually delayed her walking because it was so difficult to walk. I didn't know about EDS then I just remember the different health professionals telling me she was extremely hypermobile and I remember professionals having arguments with each other about what should be done it seemed to be a highly contentious issue, knowing what I know now, makes it a bit clearer why there was so much squabbling going on about my daughter. Anyway I will see my doctor see what she says.

[@lizzyjones8418]

I score 1 on beighton but have neck instability, tethered cord syndrome, and have a lot of pain in my joints. But they don’t move in the way people with hEDS do. But I probably do have hEDS like you say!

[@PronghornPunk]

I'm fairly sure that I have gHSD, and my mom has hEDS-like GHSD. She had to have the entire ligament in her knee replaced, she's been diagnosed with pots and fibro. I have pretty low pain these days, not super active physically, but I've struggled with physical jobs, the pain gets worse until I can't stand or get out of bed, and they fire me for it. I've always thought I was just out of shape or not trying hard enough. I had some pots-like symptoms as a teenager, dizziness and blacking out from standing. It's gone away, but i really hope it dosn't return as I age

[@KelseeBeth]

This video is super helpful for me in helping to understand hEDS, which my family and my doctor think I have. However, finding a diagnosis is going to be hard, because there is basically no one here in Oklahoma. Edit: we also are not entirely sure what kind of doctor(s) I would need to go to

[@fortnitefeaturemymapplease1674]

I have no clue what arthritis feels like but I think I have it in my toes when I stand incorrectly it goes stiff and hurts for a bit is this arthritis

[@doricoldwell29]

That was a great description of why they added and changed the official diagnosis criteria. My 1st kid got her diagnosis in 2006, all 3 of my kids have it ..as do I. Finding an EDS knowledgeable dr, like geneticists, to diagnose can be tough, it's best to ask their staff if they test and diagnose Ehler Danlos Syndrome. Since most appts take months to get in, dont waste precious time. Especially with Rhuematoligist, a few know enough about EDS, most do not. My adult son has sever sumptoms and having 2 fusions Occipital to T2, saved his life..as his cervical instability had progressed and was causing positional paralysis, he could see but not move or talk. I had to lift his head or (traction) to help his neck brace realign. He wore a hard collar until fusion. Fusion stopped the dislocation of his neck & saved his life. He still has many painful subluxations of other joints but his PT has taught him how to put them safely back in.

[@IzzyKDNA]

Thank you. Wishing you and your kids the best of luck with your treatments and dealing with EDS!

[@doricoldwell29]

@@IzzyKDNA Thank you. My oldest passed from an undiagnosed, untreated blood clot, 6wks after tethered cord surgery. Local ER thought it was pneumonia. Its important first drs to be trained in EDS

[@aurelf88]

Very informative. What type of doctors make these diagnosis?

[@macyjohnsonnn]

I was diagnosed with joint hyper mobility but wasn’t told what kind..?? I also have POTS.. I am confused about a lot of this since I’m just recently diagnosed and still learning

[@BeautifulAwakening]

Genetic testing confirms I have arthrochalasia EDS (aEDS). Main thing with my type is hip dislocation at birth, scoliosis, low muscle tone, hypermobility, low nose bridge and lots more but they are the main ones I have. My hips are deformed, my hips knees and feet don’t line up. They say abnormal gait is an ASD feature - perhaps like me this stems from a hip deformity with EDS. My subluxations include my hips, shoulders and toes.

[@elainasmith1700]

I was finally diagnosed! (Well kinda) I was told that I probably have Marfan Syndrome, but wasn’t formally diagnosed. I went to the doctor because about once a week one of my limbs would just go numb and very weak. It sucks that it won’t be treated, but it’s good to have a sorta diagnosis.

[@IzzyKDNA]

yes def a step in the right direction!!

[@franlats0705]

I have been told I am hypermobile (my thoughts were not s**t sherlock) I am in constant pain and I am pushing for a full diagnosis, I am currently waiting on my cardiologist appt. as its suspected I have POTs let alone a lot of other issues. You have described this the best I have found. Also the damn bruising yes, i am fed up of waking up to random new ones haha

[@saramae194]

Wow well done ty!

[@nickkyivy67]

I'm so excited. I finally got rid ofl am so glad that I've finally been confirmed negative from this virus After so much misleading advice from people stating that this virus does not have a cure, this made me live a long time with this virus Herpes taking antiviral medications to manage it whenever I have an outbreak. I really thought there is no cure when I went to my doctor during an outbreak and he said I can only use medications to control and treat the sore blisters of outbreak's but this was proved wrong with [e-mail] or whatsApp mobile number [phone]’’’'

[@teenartistdream4948]

My doctor says i have hypermobility and i was diagnosed in 7th grade but since then my pain has gotten worse and my muscles cramp up constanly leaving bruises and weakness but u never mentioned cramping.

[@Hamster7678]

I've got either LHSD or GHSD just because I havent had a full workup of which joints are hypermobile but they sure are all in pain! I also have some digestive issues but that might be separate. I'm honestly shocked that in all my years as a dancer I've never dislocated a joint, knock on wood. Funnily enough I also have a scoliosis. What Fun.

[@theslopchop]

Wow thank you so very much xx

[@sydneybristo22]

I was curious does anyone with EDS have stretchy / elastic hair? Like you can pull it pretty far and it bounces back and you can do that a lot of times without it breaking? I have EDS and my hair does that. Just curious

[@NoMoreCremesavers]

I’m trying to figure out if I have localized HSD but the first hand physician I went to at first thought I did and after a follow up seemed hesitant. I have a referral to see a rheumatologist, but I’m wondering if he’ll say I don’t have it either. Not trying to force a diagnosis but does anybody have any advice for how to illuminate further my symptoms to obtain a diagnosis sooner, if there is one? Thanks 💚

[@thedoopa3169]

Every time I see the word hyper mobility, I check to see if I have it. I know for a fact I don't, but my brain has to check everytime.

[@HomkHomk]

I recently got diagnosed with G-HSD by a rheumatologist, he wasn't comfortable diagnosing hEDS and would rather send me to a geneticist for that (he put a referral in, will take awhile) haha but its funny because I did meet the criteria (: only time will tell, just gotta stay positive !

[@trishab2147]

I have no idea what I have. My physical therapist definitely said I'm hyper mobile. My wrists grind and make popping noises which hurts. She suggested I get surgery for it because it's a ligament issue not a muscle issue.

[@gogetter1861]

Just been diagnosed with HEDS, Mild Lumbar Scoliosis, are they linked and also does having 9/9 Beighton level hyper mobility make Scoliosis worse?

[@tamys9827]

Think you've just diagnosed me I'm going to ask my doctor about this they have just been saying for 9 years that I am hypermobile and ha e chronic pain