When I was going to infusion centers, I had a nurse grab my wrist. She felt my bones move around and said " did I do that? She gave me a horrified look. I laughed and said no I have EDS and explain a bit about it.
My question is, why does the new criteria not include comorbidities? It’s well known that people with hEDS often have gastroparesis, POTS, Chiari, bladder dysfunction, etc. Surely if someone had all of these or a few, then they should be considered?
I think this should be a present-day minor criterion equivalent. Like where if you would be diagnosed with hEDS if only one more thing was true in addition to the present-day criteria, this should be one of those things that gives you an extra point (I'd say 2+ comorbidities would be reasonable to get credit).
Because correlations do not equal causation under any circumstances. It would have to be undoubtedly proven and accepted that hEDS causes those abnormalities. They’re just not there yet with the research and technicality of it all. I do agree that they all are correlated heavily and could be caused by hEDS, but until anyone comes up with a 100% proof of it, it’s not going to be part of any diagnostic criteria.
I’d love to see a “best country to live in if you have eds” video specifically talking about the country’s medical system, finances, knowledge of Ed’s in doctors etc.
honestly I don't think i'd be the right person to do this, even though i'd be EXTREMELY interested in watching a video on this. I will keep this in mind though and see if there's any way I could do something similar to this!
I was diagnosed with EDS while living in Japan for a few years. I then had to get formally re-diagnosed and do the process all over again in the US when I moved back. The diagnosis process was by far much faster in Japan. Most doctors were not super knowledgeable, but they were very upfront about it and sent me to the correct places and people. It takes a lot longer to get to the right doctors in the US. In Japan I ended up mostly going to Tokyo Medical University. In the US I’ve mostly gone to Cleveland Clinic, Georgetown, and University of Virginia. Also, Japan has some really great social welfare mechanisms to support those with “intractable illnesses”, while the US basically has nothing. That is something that upsets me honestly. In Japan I had national insurance and then later had government employees insurance (private through mutual aid association), both of which were pretty much the same in cost and coverage. In the US I have a “high PPO” plan through a family member’s employer. Insurance in the US can vary drastically so I can only speak to my situation. That being said, for me the cost difference has actually been the same because I was insured in both places. If I was uninsured in both places, then the US would be astronomically higher. In the US my insurance has a $3000 individual out of pocket maximum (which i believe is actually lower than most Americans), while in Japan if you spend more than about $3000 you get some deductions for income tax. So hypothetically, you can spend more money in Japan than in the US if you went ham after hitting your out of pocket maximum, simply because there is a cut off with my US insurance. There are no copays in Japan, it is always a percentage based on your income. I was in the 30% bracket I think. This means testing/procedures and newer drugs are what become pricey, while appointments are very cheap. I tried a lot of medications and most drugs were $2-40 for a month, tending to the cheaper end. It should also be noted that my medical insurance premiums in Japan were around $300 monthly. There is no outpatient physical therapy in Japan at all, only for when you are recovering from surgery. If you want PT you have to find a private clinic, usually run by foreigners, and pay $100-300 each time. I never found a PT versed in EDS in Japan. In Japan most “small” medical equipment such as braces are not covered by insurance. While they usually aren’t expensive, for an EDS patient it can be difficult. There are sometimes confounding limitations in the medications covered by insurance. For example, zofran is only for cancer patients and Toradol is only for after surgery...? Hospitals will only go by your insurance policy, so the only way to buy something like Zofran or Toradol outside of insurance is to find a private clinic that doesn’t accept insurance at all, which ends up being very pricey. It is nearly impossible to get narcotics under any circumstance other than cancer, even surgery. In fact, most doctors say it is impossible which it used to be until like 2012 or so. Only a handful of doctors have the proper government permissions to prescribe. It is a lot of paperwork for doctors I think and the patient has to have a notarized letter of permission. Further, narcotics are VERY expensive, even with insurance. But I will never get over being offered a fentanyl patch while being told no to Toradol...? Another consideration for all medications and procedures is that dosages are tailored for Japanese bodies, which can be a challenge for westerners such as myself. “Here is 50mg of ibuprofen!” So overall, if you have a more serious case that requires a lot of testing, procedures, and newer medications then maybe you will spend more in Japan, but that is only if you have a lower out of pocket maximum in the US like I do. The big deciding factor is out of pocket maximums I think. Sorry this is jumbled, I am typing it on my phone. I literally kept a binder with every medical receipt from Japan, so I have meticulous records I could look back on for specifics. Haha. But I hope maybe this gave a tiny bit of insight into a US vs Japan system comparison.
Jo Lochary I did a history search on EDS years ago, I found it originated from Scotland and spread all over UK and the world, I haven't looked in a few years but UK is the capital in the world for EDS cases. So logically speaking the people with it the most and the doctors, surgeons and specialists seeing them would be more experienced in treating and coping with EDS. Peace and Blessings
I just wanted to point that, an EDS clinic in Toronto assessed the new criteria for hEDS and they published a paper that concluded that the new diagnosis criteria isn't exactly suitable and that it should probably be revised again. So it is interesting to see the old and new criteria comparison
The Toronto EDS clinic also uses the new criteria overly aggressively and harms patients by shoving them into the HSD bin even after they wrote that article! And their RNs aren't aware of their own research or the problems their clinic outlined about the 2017 criteria and actually tried to gaslight me (but nice touch that their clinic notes say not to disbelieve HSD/hEDS patients because they often have been mistreated by medical staff... maybe they should make their staff read that statement before allowing them to cause harm?)
@@jadesimon9880 wow that's wild! I'm really sorry that that you've been harmed by the EDS clinic in Toronto :( . I was just speaking from a scientific point of view since I haven't been seen by that clinic (I don't even live in Toronto). I feel like doctors just need to actually listen to EDS patients as a whole :(
i sincerely hope they do change the hypermobility testing because my BIGGEST problem with trying to get diagnosed is people see that a couple of my joints don’t fit the current scale enough so they won’t even look at the rest of me and immediately write me off and tell me to just go exercise which i’ve already told them makes it worse! i desperately need a doctor like the one you spoke to who actually will look at the whole body i’ve just yet to find one close enough who’ll do that sadly
Beighton scores urks me so much because I'm hyper mobile and not flexible if that makes since like my body is actually overly tense to compensate for the hyper mobility so I very much don't pass beighton
This is a really great video! So informative! I was one of the first people in the UK diagnosed with hEDS by the new criteria in 2017 so this was really cool to hear the differences
I’m newly diagnosed with hEDS, previously miss diagnosed for 10 years. Thank you for your videos Izzy!!! I’m in terrible joint and musculoskeletal pain. Does anyone with hEDS have debilitating pain??? Some days I feel like giving up the fight for good medical treatment, but your videos provide me with facts backed by evidence to show my doctors. Thanks again lovely lady!!!
so many people also struggle with a lot of pain!! It's to varying degrees, but im sure there are people who expereince EDS in similar ways! If you're looking to connect with others who fully understand you, id highly suggest checking out some EDS support groups on facebook! xoxoxo
My Neurologist performed the new criteria on me and that’s how I got my diagnosis of EDS. I was more hyper mobile when I was a child but due to age, not as much. I have more chronic pain. I have dislocated my shoulder and have had my left hip go in and out as I was walking down the stairs in my house. It felt so weird, luckily I didn’t fall. Nope, I saved that for when I was going into the building at my work, thanks for my knee going out on me!
Lovely video! Very good point you made about the Beighton score. I personally score 9 (oops) but I always believed it's not really reliable as I watch so many other people who are diagnosed with EDS, have lower score than me and dislocate more! Also your timing is great. I have been trying to figure out what's wrong for 5 years now, only thing I managed to hear was fibromyalgia 2 years ago and JOINT HYPERMOBILITY SYNDROME (by a presumably good rheumatologist) literally a week ago. So thank you for giving me more info to fight with haha 😁
Sometimes it is quite funny to have something wrong with your joints. I started a new job and was walking with my coworker and when I turned my leg, my ankle cracked really loudly and I was like "sorry, my joints can be a little loud sometimes" And he was really horrified and was like "that was your joint?? I thought that was like your shoe or something, holy shit" Or when people pull on something and it moves out of place xD It just sucks that so few doctors know about EDS, I've asked all 7 doctors I recently saw (2019-2020) if they know anything about EDS and they were all like "no, sorry" And the only EDS specialists in my area (ish) test for classical and vascular. My hope is that they at least know something about hEDS and other types or can refer me to someone else of I don't have the ones they test for.
I'd be so curious to see the Hospital del Mar test of hypermobility that you mentioned demonstrated--some are hard to understand just being written out. I'm unable to find them demonstrated online.
@@IzzyKDNA I read the description online but don't understand what they are trying to describe... I know I'm hypermobile in more joints than the main ones too.
Not boring at all. Thanks for the overview and links. My diagnosis is EDS (unspecified) from one Dr and hypermobility non-EDS from another. But, I have had full dislocations of my knees, sublocations of knees, shoulders, elbows, fingers; fragile skin, the list goes on. My knees are so unstable they move when I'm in bed and still. I can't sit on a chair without armrests for support.
I have a HSD diagnosis but arguably do fit the hEDS criteria (I have a definite family history but as they remain undiagnosed and I am the first one to push for a diagnosis I didn't score on that criteria). It's frustrating but I totally understand why it was necessary for research purposes to seperate the criteria. I'm interested to see how things change again in the future.
Hey Izzy, I just wanted to say I’m at the very start of my journey with being diagnosed shortly at the zebras society in Melbourne Australia. There are 9 people in my family waiting on my diagnosis, I just wanted to say thank you for spreading awareness about HEDS. Because of your videos I have been able to relax my anxiety of having the drs at the zebras society care for me. As you can imagine it is no easy road to get to this point even in Australia so I definitely relate to sooo many of your signs and symptoms. Anyways just wanted to say thank you for easing my anxiety’s pre-diagnosis, you are doing wonderful things for people all over the world! Thanks again girl 😊
Yea - EDS clinic in Toronto told me "you're more symptomatic than many people we diagnose with hEDS" but then refused to diagnose me on the basis of an incorrect interpretation of 2 of the minor criteria (refused to take my medical records into account so refused to 'check' the boxes for two minor criteria that I pass, that my GP agrees I pass). So now I'm stuck with the HSD diagnosis and insurance refuses to cover many treatments for EDS related issues because they don't recognize HSD. Super fun. AND the EDS clinic in Toronto swore up and down that that wouldn't happen to me because "everyone in Toronto treats HSD and hEDS the same". It's really a flawed set of criteria that is being implemented in far too stringent a manner by some doctors and supposed specialist clinics. They're hurting patients with this and need to update it soon.
Concerned about not getting the "full fledged diagnosis " as you say, as I believe my 2 adult children have Heds & their future care will be compromised. Thank you for the video, insightful and helpful!
Thank you for your videos Izzy! Because of you I was finally able to be diagnosed with hEDS and POTS which have caused me issues for so long. I never was able to figure out what was wrong until I stumbled across your channel.
I’m going to a genetic doctor on August 5th! I watched another video earlier and you said something about not actually wanting the diagnosis but wanting it at the same time. That’s spot on. It’s definitely so hard to be in this waiting period!! I told one of the physical therapist today that it feels weird to want something like this but it would be so hard to start over. She said you wouldn’t be starting over you would just be adding on. Physical therapy has definitely been what has given me more confidence in my search. When the younger one says yeah so they teach you ribs don’t move but clearly that’s not true with you so let’s try this.... Anyway sorry for the novel about me! Thank you for all your videos! ❤️ Ashley
My PCP suspects I might have a form of EDS (most likely hEDS) and wants to find a specialist for me. Your videos have been super helpful for me to understand what EDS is! Thank you! I would love to see a video in the future on HSD vs hEDS. I am close to reaching the 5 checks needed for Feature A, but I don't think I quite hit it, unless my cardiologist does find that I have the heart issues listed in Feature A. However, my mom has more aspects of Feature A than I do, but she has never been tested for EDS. She wouldn't be able to pass the Beighton Score anymore because of joint pain and instantly. So, I technically don't have a positive family history. Obviously I won't know until I go to the specialist if I have hEDS, HSD, or something else, but I would love to see a video going more in depth into HSD and how it is similar and different than hEDS. Thank you for reading!
Hi Izzy, can you share the name of the study that you mentioned at 4:48. Great video btw ❤❤❤ I also wish that they included all the comorbidities (yeah, I know it's hard) but some doctors say "there is no connection between ... and EDS" Like you said, doctors might interpret.
I know that gastroperisis awareness month is coming up and I was wondering if cooking or fermenting veggies made a difference in eating them? Because a friend who cares about my limited diet asked me that and truthfully I have no idea... I guess I'll have to try it and see how it goes. But I thought I'd ask you too, because maybe you might find the idea good for a topic. Thanks for making these videos! Without your videos I'd still be clueless about EDS and all the cormorbidities that go with it. Hopefully this virus will go away so I can get to my primary care physician to tell her about these issues. It's not an emergency so I'm waiting. But my skin is getting more transparent?? I know that can go with EDS too. And I can twist my inner elbow so it's above my outer wrist. No pain at all. I doubt if that's normal.
Hi Izzy! I have EDS and its so great to find people like me on youtube! I came across your video about your Tibial Tubercle Osteotomy! I am going to be having this surgery soon and I wanted to know if it was worth it and if it helped your knee issues. I have already had surgeries on both my hips but do not know what to expect with a knee surgery especially such a major one, thank you and I love your videos!
okay but.... for those of us without family history (my family believes yoga fixes all) the fitting in 2 of 3 sections doesn't work. I am 18. I haven't had a hernia or prolapse. I only meet 3-4 of that category of common side effects. You need 5. I am in pain so often, I sleep most the day. I have had dislocations from trying to sit down in a car. According to the first criteria I most definetly have hEDS! According to the new stuff I might under inspection but will probably not be diagnosed until years later once I start getting more severe additional symptoms. Basically have to wait until I get a hernia or prolapse. HSD isn't taken seriously. I am applying to get a wheelchair so I can continue working. Not only is it not better, it is causing serious harm to groups of people. I am barely getting by, while I was accepted to the EDS clinic in toronto there is a good chance I won't be diagnosed because of the 2017 criteria, because my family doesn't seek medical attention as much as they probably should (mother :hypermobile with hernias etc. Dad: chronic pain Grandparent: dislocated finger while making a bed) Doctors should diagnose by the Hospital del mar scale, look at secondary symptoms AND not only the diagnosis of other family members but the symptoms of said family members. While I fit the beighton scale, I have joints that can't do the movements as easy because I have a cyst (a common symptom that IS NOT listed)
you dont need hernias to pass the EDS criteria. also the first part of the criteria, 20% of the population or so will pass. it only tests hypermobility and most causes of hypermobility are not EDS. I hope this is a bit helpful. maybe you are just hypermobile and there is something else csausing your pain like an auto immune disease or something else
Izzy your channel is great and the videos are really informative!!! you know what I face with in my country with all the doctors I’ve been to they confuse so much fibromyalgia and hyper mobility and I am hyper mobile enough to pass HSD and I even qualify for HEDS but they have told me a million times that it’s only fibromyalgia. can you make a video maybe In the future that covers this topic and the main difference between fibromyalgia and HSD? Hugs from Turkey 🥰🤗
Great info! Thanks so much! My rheumatologist gave a provisional diagnosis of “Ehlers-Danlos Syndrome, unspecified” last week- based on 2017 clinical criteria with a 9/9 Beighton score. EDS was suspected by my pediatrician who diagnosed Hypermobility Syndrome, but my parent declined referral to a specialist. Next step: genetic testing to confirm or rule out other types of EDS from hypermobile type (hEDS). Unfortunately, a lot of insurance companies don’t cover genetic testing, so getting a formal diagnosis with the new criteria is more challenging. Some doctors may diagnose hEDS without genetic testing. I have another rare disease, so doctors need to pinpoint my type with certainty. If genetics are negative, it’ll be hEDS. 🦓
I was wondering if you know anything about the removal of the hEDS diagnosis? I asked my rheumatologist this week if I could be assessed for hEDS as I am already diagnosed really hyper mobile and I have a tonne of other symptoms that would make an hEDS diagnosis makes sense. However, she told me that the hEDS diagnosis no longer exists and I just have HSD. I am writing from the UK but when I wrote to the EDSd society in the U.K. they referenced the American rheumatology association (or whatever it was called) so I’m guessing that America and U.K. are working on the same criteria. If you know anything about it, can you do a video on it please? You know loads and you explain it so well! 😁👍🏻
So, I'm 31, and have a 9/9 Beighton Score. Is it likely that I might have more than one kind of EDS? I also feel like I could essentially pass hypermobility test, because of how "bendy" I am. I was a lot more bendy until I got injured at 24 (and never fully recovered from it). My fingers used to bend to around 170° until I was around 25. Now, they only bend to around 120° or so. Still hypermobile... just not AS hypermobile as I used to be. I recently got an hEDS diagnosis. I have had MANY MANY different things ruled out, because I've been sent to be tested for things over and over again (with results being normal every single time) for the past 6 years, but I had many others tests done for around a decade or so. I've been on a waitlist for genetic testing for years. Here in Atlantic Canada, we have no EDS specialists, and we have very little access to healthcare as a whole. I have been gaslit and called a hypochondriac for many years. Your video with your coworkers who have EDS is the reason I was able to get diagnosed with hEDS (by printing off that diagnostic sheet and taking it to my family doctor). She wasn't aware that she could do a clinical diagnosis for hEDS until I took that sheet to her and told her that the Atlantic Ehlers Danlos Society website says that any MD can. I'm hoping that the diagnosis helps me get better treatment to see some quality of life improvement. As it stands, I at least sublux from even lifting a 2L bottle with my wrists. I can lift it okay if I use both arms though. I've been trying to find alternate ways of doing things for years now, because doing it the "normal" way injures me. Maybe the diagnosis will get me treatment that will make me stronger or something🤞
Hi Izzy! Really glad I found your channel. Do you know if there is a genetic test for EDS? Specifically classical HEDS? I keep reading mixed information; some say there is, others say there’s not.
May I ask - are you supposed to press for example your finger to the most you can do, even tho it hurts a bit, or you are supposed to do it to the point you don't have to use any force? Thanks!
Hey! I've noticed you've done numerous videos on POTS including different types but i haven't seen you release a video on Hyperadrenergic PoTS (the condition i have..) anyway i was hoping you can do one on that mostly bc its extremely under-studied and has little to no research put into it.
I got tested on clEDS and I need some help with the confusing test results: The medical assessment says: *An unknown, heterozygous gene-variant of unclear clinical significance was found that can't be classified as pathological or harmless. Other abnormalities besides of that couldn't be found. In order to get sick from an autosomal-recessive disease like clEDS you need to have two pathological gene-variants.* Does it mean that I carry a possibly harmful gene-variant that didn't effect myself because I need to have two of these?
Hey! First of all, disclaimer: I don't have a medical degree or work in a medical field. I only have *some* knowledge of genetics, it's always safer to ask your doctor about it. TNXB (Tenascin X) is a protein that is part of connective tissues. It is encoded in the DNA as the so-called "TNXB Gene". In order for the TNXB gene not to enable the production of the TNXB protein, it must be different from the "normal" TNXB gene. The TNXB gene has two occurances in the DNA (we'll call this allele; yes this is slightly inaccurate but better to understand). One of your TNXB gene alleles is abnormal but it's variant is unknown. This, however, does not matter for a potential clEDS diagnosis because clEDS is recessive, meaning that you need two defective alleles. I don't know whether it can be harmful but from what I understand, your DNA includes a sequence of the correct TNXB production instructions. The information about how the TNXB protein is made correctly is only present once in your DNA. If it was not present at all, you would be diagnosed with clEDS. Hope this helped you. :)
Hey! I think this is a great questions to talk about with a genetic counselor or geneticist! i understand clEDS to a certain extent, but im not able to interpret results or anything.
@@IzzyKDNA Thanks you both for your informative answers! My geneticist told me that I'm carrier of a potentially harmless variant and in order to get sick from clEDS I need to have two pathological variants so it's unrelevant for me but I'm still concerned.
Have you tried prolotherapy for your Eds symptoms?? I looked into it and there seems to be a well known clinic in Florida that specializes in hyper mobility in eds patients using prolotherapy.
I’m just coming across this. Hoping someone can help me find a Dr to give final diagnosis. I live near New Orleans. Every one of my Drs say they don’t diagnose it and do not know who to recommend. If by some chance someone comes across this comment and can give advice I would appreciate it so much!
Hi izzy! I have a question or 2 for you. So, I pass the criteria for hEDS along with other things with it like stomache issues. I tried talking to my doctor about it and she just wouldn't listen. She said no, I'm 100% sure you don't have it, and I won't send you to a geneticist for it. Her main reason was that I didn't have a particularly high pallet in the mouth. Is that a requirement? The high pallet? Should I see another doctor for another opinion?
Huh... I thought that I didn't fit the new criteria and that's why I wasn't diagnosed with heads, but apparently I do 🤔 my neurologist told me that they'd treat me as if I had it though, because there is so much overlap of symptoms and comorbities, so I guess it's not that big of a deal. Still, I may bring it up in my next visit, just to get some clarification as to why she thinks my hypermobility (+disautonomia+gastroparesis+IBS) is unrelated to EDS. I wish I had a more concrete diagnosis because it would make it easier to deal with other doctors, paperwork, etc. Unfortunately I guess I'm stuck with POTS and sucky joints for now
@@riley3984 yeah, I'm definitely bringing it up! Thanks for sharing :) Also, I didn't know about the hearing loss. In my family we don't know where my issues come from because there are signs of my illnesses in both of my parents' sides. For instance, my mother is hypermobile. On the other hand, my grandma on my father's side has had to deal with orthostatic hypotension since she was a young woman (it honestly sounds like POTS to me but I don't want to diagnose her, obviously). She's also deaf. She started having some hearing loss and then suddenly one morning when she woke up she was completely deaf (I think she was around 60 at the time). Doctors have never found an explanation as to why that happened, so now I'm wondering if that could be related to EDS... It's all speculation, of course, but I find it interesting anyway!
I kinda need some help. I’m 15 years old and I’m about 95% sure that I have hEDS. I’ve had minor joint pain for most of my life but I’d never considered EDS until recently, I realized my shoulder has be falling out of socket and I meet the criteria. I’ve been wanting to go the doctor to see for sure but my parents say, “What’s the point of spending money to get a diagnoses, if you’re not having to much pain.” What should I do?
I have a question that you may or may not be able to answer. I am diagnosed with Joint hyper mobility syndrome as of right now but in process of being tested for EDS because 4 of my doctors believe it is it. But my question is with the joint issues specifically can their be “flare ups” like a period of time where they hurt more often like aching and stuff and where they dislocate a little easier?? With JHS and EDS I am unsure if those diagnoses have flare ups.
Yes!! I tried to make the zebra sticker inclusive by making the second biggest word "HSD," but i dont have anything that's specific to HSD so i'll see what I can do!
Crying Hippy we know all of them other than hEDS! The ehlers danlos society details the mutations on their website if you’re interested in learning about it!
Izzy Kornblau last research update I knew was only vascular and classical can be diagnosed with a genetic test. So only hyper mobile now is the only one that can't be tested genetically? Wow the gene mapping has come along way in last 5 years if so Pat yourself on the back if you submitted your DNA to EDS research in Washington years ago I gave up on meds and the medical industry before diagnosed and got back into it after only to find there is nothing except here take this pill and sorry I don't know what EDS is I'm still in the same vote and living in north Americas 4th largest city with no doctor and was told today by another phone Doctor that EDS is not deadly I give up Hugs and Blessings
I know this an old video but i just had my test but this gentic dr was mean said all my heath problem is heds that i past but going tell my dr it just cronic pain because i havent seen a rhumertolgest sorry if spell wong also confuse me with the art leight part kept teen turn forward no backward no forward no sidwards got fusterated as lady told husband alredy they going say no even if postive tell him i know too much about my heath problem what you do if told this what be my next step ask for your help i watch alot your videos too
I just got diagnosed with HSD when I went in for EDS. I still believe I have EDS and he seemed to intentionally not mark off my soft and stretchy skin. He said it is but basically didn't want me to have a "bad diagnosis" and they are only diagnosing the severe cases at the moment. I have family history, disautonomia, unstable/ hypermibile joints, very frequent subluxation, very soft skin that is mostly stretchy. He said there was no proof of comorbidities existing. I have a lot of joint pain and feel like I deserve an EDS diagnosis. I feel like my PT that I was sent to see after my Dr. Appt for EDS was not taking me seriously until he accidentally went to lift my arm and my shoulder popped out. He was trying to tell me how great it is that I dont have EDS. I use a walker most days or my ankles will do the thing. So lucky to not have EDS tho. I'm so frustrated and I dont know what to do about it😔
Wow, it sounds like you're really really suffering. Based on what you said, I would see if a different physician would diagnose EDS - especially since you think you do have it. Misdiagnoses happen all the time.
I was today days old when I learnt that being able to manipulate the bones in your wrist, and knee are not normal… I thought everyone could move their bones… the more I read the more I’m like crap I may be right about having Hypermobile Ehlers Danlos despite no obvious family history - but of course mutations have to happen somewhere - maybe I’m the one who developed the mutation they are still identifying - unless it was my dad - I don’t know him so can’t ask him
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When I was going to infusion centers, I had a nurse grab my wrist. She felt my bones move around and said " did I do that? She gave me a horrified look. I laughed and said no I have EDS and explain a bit about it.
My question is, why does the new criteria not include comorbidities? It’s well known that people with hEDS often have gastroparesis, POTS, Chiari, bladder dysfunction, etc. Surely if someone had all of these or a few, then they should be considered?
Lumos Nox im going to touch upon this in a video!
I was wondering this too
I think it's because they can't completely prove it so they can't include it. Makes no sense that they can't prove it to me but whatever.
I think this should be a present-day minor criterion equivalent. Like where if you would be diagnosed with hEDS if only one more thing was true in addition to the present-day criteria, this should be one of those things that gives you an extra point (I'd say 2+ comorbidities would be reasonable to get credit).
Because correlations do not equal causation under any circumstances. It would have to be undoubtedly proven and accepted that hEDS causes those abnormalities. They’re just not there yet with the research and technicality of it all. I do agree that they all are correlated heavily and could be caused by hEDS, but until anyone comes up with a 100% proof of it, it’s not going to be part of any diagnostic criteria.
I’d love to see a “best country to live in if you have eds” video specifically talking about the country’s medical system, finances, knowledge of Ed’s in doctors etc.
None but uk does have a hospitol team dedicated to it but wait l I st is 5 years as of rn
honestly I don't think i'd be the right person to do this, even though i'd be EXTREMELY interested in watching a video on this. I will keep this in mind though and see if there's any way I could do something similar to this!
I was diagnosed with EDS while living in Japan for a few years. I then had to get formally re-diagnosed and do the process all over again in the US when I moved back. The diagnosis process was by far much faster in Japan. Most doctors were not super knowledgeable, but they were very upfront about it and sent me to the correct places and people. It takes a lot longer to get to the right doctors in the US. In Japan I ended up mostly going to Tokyo Medical University. In the US I’ve mostly gone to Cleveland Clinic, Georgetown, and University of Virginia. Also, Japan has some really great social welfare mechanisms to support those with “intractable illnesses”, while the US basically has nothing. That is something that upsets me honestly.
In Japan I had national insurance and then later had government employees insurance (private through mutual aid association), both of which were pretty much the same in cost and coverage. In the US I have a “high PPO” plan through a family member’s employer. Insurance in the US can vary drastically so I can only speak to my situation.
That being said, for me the cost difference has actually been the same because I was insured in both places. If I was uninsured in both places, then the US would be astronomically higher. In the US my insurance has a $3000 individual out of pocket maximum (which i believe is actually lower than most Americans), while in Japan if you spend more than about $3000 you get some deductions for income tax. So hypothetically, you can spend more money in Japan than in the US if you went ham after hitting your out of pocket maximum, simply because there is a cut off with my US insurance. There are no copays in Japan, it is always a percentage based on your income. I was in the 30% bracket I think. This means testing/procedures and newer drugs are what become pricey, while appointments are very cheap. I tried a lot of medications and most drugs were $2-40 for a month, tending to the cheaper end. It should also be noted that my medical insurance premiums in Japan were around $300 monthly.
There is no outpatient physical therapy in Japan at all, only for when you are recovering from surgery. If you want PT you have to find a private clinic, usually run by foreigners, and pay $100-300 each time. I never found a PT versed in EDS in Japan. In Japan most “small” medical equipment such as braces are not covered by insurance. While they usually aren’t expensive, for an EDS patient it can be difficult. There are sometimes confounding limitations in the medications covered by insurance. For example, zofran is only for cancer patients and Toradol is only for after surgery...? Hospitals will only go by your insurance policy, so the only way to buy something like Zofran or Toradol outside of insurance is to find a private clinic that doesn’t accept insurance at all, which ends up being very pricey. It is nearly impossible to get narcotics under any circumstance other than cancer, even surgery. In fact, most doctors say it is impossible which it used to be until like 2012 or so. Only a handful of doctors have the proper government permissions to prescribe. It is a lot of paperwork for doctors I think and the patient has to have a notarized letter of permission. Further, narcotics are VERY expensive, even with insurance. But I will never get over being offered a fentanyl patch while being told no to Toradol...? Another consideration for all medications and procedures is that dosages are tailored for Japanese bodies, which can be a challenge for westerners such as myself. “Here is 50mg of ibuprofen!”
So overall, if you have a more serious case that requires a lot of testing, procedures, and newer medications then maybe you will spend more in Japan, but that is only if you have a lower out of pocket maximum in the US like I do. The big deciding factor is out of pocket maximums I think.
Sorry this is jumbled, I am typing it on my phone. I literally kept a binder with every medical receipt from Japan, so I have meticulous records I could look back on for specifics. Haha. But I hope maybe this gave a tiny bit of insight into a US vs Japan system comparison.
Jo Lochary I did a history search on EDS years ago, I found it originated from Scotland and spread all over UK and the world, I haven't looked in a few years but UK is the capital in the world for EDS cases. So logically speaking the people with it the most and the doctors, surgeons and specialists seeing them would be more experienced in treating and coping with EDS.
Peace and Blessings
Annie this is an awesome comparison and deserves an award
Peace and God Bless
I just wanted to point that, an EDS clinic in Toronto assessed the new criteria for hEDS and they published a paper that concluded that the new diagnosis criteria isn't exactly suitable and that it should probably be revised again. So it is interesting to see the old and new criteria comparison
The Toronto EDS clinic also uses the new criteria overly aggressively and harms patients by shoving them into the HSD bin even after they wrote that article! And their RNs aren't aware of their own research or the problems their clinic outlined about the 2017 criteria and actually tried to gaslight me (but nice touch that their clinic notes say not to disbelieve HSD/hEDS patients because they often have been mistreated by medical staff... maybe they should make their staff read that statement before allowing them to cause harm?)
@@jadesimon9880 wow that's wild! I'm really sorry that that you've been harmed by the EDS clinic in Toronto :( . I was just speaking from a scientific point of view since I haven't been seen by that clinic (I don't even live in Toronto). I feel like doctors just need to actually listen to EDS patients as a whole :(
i sincerely hope they do change the hypermobility testing because my BIGGEST problem with trying to get diagnosed is people see that a couple of my joints don’t fit the current scale enough so they won’t even look at the rest of me and immediately write me off and tell me to just go exercise which i’ve already told them makes it worse! i desperately need a doctor like the one you spoke to who actually will look at the whole body i’ve just yet to find one close enough who’ll do that sadly
Beighton scores urks me so much because I'm hyper mobile and not flexible if that makes since like my body is actually overly tense to compensate for the hyper mobility so I very much don't pass beighton
Me either so my doctor wouldn’t “diagnose” me with Eds even tho I have all of the symptoms
This is a really great video! So informative! I was one of the first people in the UK diagnosed with hEDS by the new criteria in 2017 so this was really cool to hear the differences
I’m newly diagnosed with hEDS, previously miss diagnosed for 10 years. Thank you for your videos Izzy!!! I’m in terrible joint and musculoskeletal pain. Does anyone with hEDS have debilitating pain??? Some days I feel like giving up the fight for good medical treatment, but your videos provide me with facts backed by evidence to show my doctors. Thanks again lovely lady!!!
so many people also struggle with a lot of pain!! It's to varying degrees, but im sure there are people who expereince EDS in similar ways! If you're looking to connect with others who fully understand you, id highly suggest checking out some EDS support groups on facebook! xoxoxo
My Neurologist performed the new criteria on me and that’s how I got my diagnosis of EDS. I was more hyper mobile when I was a child but due to age, not as much. I have more chronic pain. I have dislocated my shoulder and have had my left hip go in and out as I was walking down the stairs in my house. It felt so weird, luckily I didn’t fall. Nope, I saved that for when I was going into the building at my work, thanks for my knee going out on me!
Lovely video! Very good point you made about the Beighton score. I personally score 9 (oops) but I always believed it's not really reliable as I watch so many other people who are diagnosed with EDS, have lower score than me and dislocate more! Also your timing is great. I have been trying to figure out what's wrong for 5 years now, only thing I managed to hear was fibromyalgia 2 years ago and JOINT HYPERMOBILITY SYNDROME (by a presumably good rheumatologist) literally a week ago. So thank you for giving me more info to fight with haha 😁
Sometimes it is quite funny to have something wrong with your joints. I started a new job and was walking with my coworker and when I turned my leg, my ankle cracked really loudly and I was like "sorry, my joints can be a little loud sometimes"
And he was really horrified and was like "that was your joint?? I thought that was like your shoe or something, holy shit"
Or when people pull on something and it moves out of place xD
It just sucks that so few doctors know about EDS, I've asked all 7 doctors I recently saw (2019-2020) if they know anything about EDS and they were all like "no, sorry"
And the only EDS specialists in my area (ish) test for classical and vascular. My hope is that they at least know something about hEDS and other types or can refer me to someone else of I don't have the ones they test for.
I'd be so curious to see the Hospital del Mar test of hypermobility that you mentioned demonstrated--some are hard to understand just being written out. I'm unable to find them demonstrated online.
Mills' Skits yes I’m planning on doing this and other tests of hypermobility!
@@IzzyKDNA Thank you so much! :)
@@IzzyKDNA I read the description online but don't understand what they are trying to describe... I know I'm hypermobile in more joints than the main ones too.
Not boring at all. Thanks for the overview and links. My diagnosis is EDS (unspecified) from one Dr and hypermobility non-EDS from another. But, I have had full dislocations of my knees, sublocations of knees, shoulders, elbows, fingers; fragile skin, the list goes on. My knees are so unstable they move when I'm in bed and still. I can't sit on a chair without armrests for support.
I have a HSD diagnosis but arguably do fit the hEDS criteria (I have a definite family history but as they remain undiagnosed and I am the first one to push for a diagnosis I didn't score on that criteria). It's frustrating but I totally understand why it was necessary for research purposes to seperate the criteria. I'm interested to see how things change again in the future.
Do you have co-morbids too? Maybe try test again?
Hey Izzy, I just wanted to say I’m at the very start of my journey with being diagnosed shortly at the zebras society in Melbourne Australia. There are 9 people in my family waiting on my diagnosis, I just wanted to say thank you for spreading awareness about HEDS. Because of your videos I have been able to relax my anxiety of having the drs at the zebras society care for me. As you can imagine it is no easy road to get to this point even in Australia so I definitely relate to sooo many of your signs and symptoms.
Anyways just wanted to say thank you for easing my anxiety’s pre-diagnosis, you are doing wonderful things for people all over the world! Thanks again girl 😊
Yea - EDS clinic in Toronto told me "you're more symptomatic than many people we diagnose with hEDS" but then refused to diagnose me on the basis of an incorrect interpretation of 2 of the minor criteria (refused to take my medical records into account so refused to 'check' the boxes for two minor criteria that I pass, that my GP agrees I pass). So now I'm stuck with the HSD diagnosis and insurance refuses to cover many treatments for EDS related issues because they don't recognize HSD. Super fun. AND the EDS clinic in Toronto swore up and down that that wouldn't happen to me because "everyone in Toronto treats HSD and hEDS the same". It's really a flawed set of criteria that is being implemented in far too stringent a manner by some doctors and supposed specialist clinics. They're hurting patients with this and need to update it soon.
Concerned about not getting the "full fledged diagnosis " as you say, as I believe my 2 adult children have Heds & their future care will be compromised.
Thank you for the video, insightful and helpful!
Thank you for your videos Izzy! Because of you I was finally able to be diagnosed with hEDS and POTS which have caused me issues for so long. I never was able to figure out what was wrong until I stumbled across your channel.
I’m going to a genetic doctor on August 5th! I watched another video earlier and you said something about not actually wanting the diagnosis but wanting it at the same time. That’s spot on. It’s definitely so hard to be in this waiting period!! I told one of the physical therapist today that it feels weird to want something like this but it would be so hard to start over. She said you wouldn’t be starting over you would just be adding on. Physical therapy has definitely been what has given me more confidence in my search. When the younger one says yeah so they teach you ribs don’t move but clearly that’s not true with you so let’s try this....
Anyway sorry for the novel about me! Thank you for all your videos! ❤️ Ashley
My PCP suspects I might have a form of EDS (most likely hEDS) and wants to find a specialist for me. Your videos have been super helpful for me to understand what EDS is! Thank you! I would love to see a video in the future on HSD vs hEDS. I am close to reaching the 5 checks needed for Feature A, but I don't think I quite hit it, unless my cardiologist does find that I have the heart issues listed in Feature A. However, my mom has more aspects of Feature A than I do, but she has never been tested for EDS. She wouldn't be able to pass the Beighton Score anymore because of joint pain and instantly. So, I technically don't have a positive family history. Obviously I won't know until I go to the specialist if I have hEDS, HSD, or something else, but I would love to see a video going more in depth into HSD and how it is similar and different than hEDS. Thank you for reading!
Hi Izzy, can you share the name of the study that you mentioned at 4:48.
Great video btw ❤❤❤
I also wish that they included all the comorbidities (yeah, I know it's hard) but some doctors say "there is no connection between ... and EDS" Like you said, doctors might interpret.
I just added my main sources in the description. i believe it was the fourth one!
I know that gastroperisis awareness month is coming up and I was wondering if cooking or fermenting veggies made a difference in eating them? Because a friend who cares about my limited diet asked me that and truthfully I have no idea... I guess I'll have to try it and see how it goes. But I thought I'd ask you too, because maybe you might find the idea good for a topic.
Thanks for making these videos! Without your videos I'd still be clueless about EDS and all the cormorbidities that go with it.
Hopefully this virus will go away so I can get to my primary care physician to tell her about these issues. It's not an emergency so I'm waiting. But my skin is getting more transparent?? I know that can go with EDS too. And I can twist my inner elbow so it's above my outer wrist. No pain at all. I doubt if that's normal.
Hi Izzy! I have EDS and its so great to find people like me on youtube! I came across your video about your Tibial Tubercle Osteotomy! I am going to be having this surgery soon and I wanted to know if it was worth it and if it helped your knee issues. I have already had surgeries on both my hips but do not know what to expect with a knee surgery especially such a major one, thank you and I love your videos!
Great vidéo Izzy! Thank you! xxxxxxx
okay but.... for those of us without family history (my family believes yoga fixes all) the fitting in 2 of 3 sections doesn't work. I am 18. I haven't had a hernia or prolapse. I only meet 3-4 of that category of common side effects. You need 5. I am in pain so often, I sleep most the day. I have had dislocations from trying to sit down in a car. According to the first criteria I most definetly have hEDS! According to the new stuff I might under inspection but will probably not be diagnosed until years later once I start getting more severe additional symptoms. Basically have to wait until I get a hernia or prolapse. HSD isn't taken seriously. I am applying to get a wheelchair so I can continue working. Not only is it not better, it is causing serious harm to groups of people. I am barely getting by, while I was accepted to the EDS clinic in toronto there is a good chance I won't be diagnosed because of the 2017 criteria, because my family doesn't seek medical attention as much as they probably should (mother :hypermobile with hernias etc. Dad: chronic pain Grandparent: dislocated finger while making a bed) Doctors should diagnose by the Hospital del mar scale, look at secondary symptoms AND not only the diagnosis of other family members but the symptoms of said family members. While I fit the beighton scale, I have joints that can't do the movements as easy because I have a cyst (a common symptom that IS NOT listed)
you dont need hernias to pass the EDS criteria. also the first part of the criteria, 20% of the population or so will pass. it only tests hypermobility and most causes of hypermobility are not EDS. I hope this is a bit helpful. maybe you are just hypermobile and there is something else csausing your pain like an auto immune disease or something else
Izzy your channel is great and the videos are really informative!!! you know what I face with in my country with all the doctors I’ve been to they confuse so much fibromyalgia and hyper mobility and I am hyper mobile enough to pass HSD and I even qualify for HEDS but they have told me a million times that it’s only fibromyalgia. can you make a video maybe In the future that covers this topic and the main difference between fibromyalgia and HSD? Hugs from Turkey 🥰🤗
Great info! Thanks so much! My rheumatologist gave a provisional diagnosis of “Ehlers-Danlos Syndrome, unspecified” last week- based on 2017 clinical criteria with a 9/9 Beighton score. EDS was suspected by my pediatrician who diagnosed Hypermobility Syndrome, but my parent declined referral to a specialist. Next step: genetic testing to confirm or rule out other types of EDS from hypermobile type (hEDS). Unfortunately, a lot of insurance companies don’t cover genetic testing, so getting a formal diagnosis with the new criteria is more challenging. Some doctors may diagnose hEDS without genetic testing. I have another rare disease, so doctors need to pinpoint my type with certainty. If genetics are negative, it’ll be hEDS. 🦓
I was wondering if you know anything about the removal of the hEDS diagnosis? I asked my rheumatologist this week if I could be assessed for hEDS as I am already diagnosed really hyper mobile and I have a tonne of other symptoms that would make an hEDS diagnosis makes sense. However, she told me that the hEDS diagnosis no longer exists and I just have HSD. I am writing from the UK but when I wrote to the EDSd society in the U.K. they referenced the American rheumatology association (or whatever it was called) so I’m guessing that America and U.K. are working on the same criteria.
If you know anything about it, can you do a video on it please? You know loads and you explain it so well! 😁👍🏻
This is a great video. I found it very informative. ❤️
So, I'm 31, and have a 9/9 Beighton Score. Is it likely that I might have more than one kind of EDS?
I also feel like I could essentially pass hypermobility test, because of how "bendy" I am. I was a lot more bendy until I got injured at 24 (and never fully recovered from it). My fingers used to bend to around 170° until I was around 25. Now, they only bend to around 120° or so. Still hypermobile... just not AS hypermobile as I used to be.
I recently got an hEDS diagnosis. I have had MANY MANY different things ruled out, because I've been sent to be tested for things over and over again (with results being normal every single time) for the past 6 years, but I had many others tests done for around a decade or so.
I've been on a waitlist for genetic testing for years. Here in Atlantic Canada, we have no EDS specialists, and we have very little access to healthcare as a whole. I have been gaslit and called a hypochondriac for many years.
Your video with your coworkers who have EDS is the reason I was able to get diagnosed with hEDS (by printing off that diagnostic sheet and taking it to my family doctor). She wasn't aware that she could do a clinical diagnosis for hEDS until I took that sheet to her and told her that the Atlantic Ehlers Danlos Society website says that any MD can. I'm hoping that the diagnosis helps me get better treatment to see some quality of life improvement. As it stands, I at least sublux from even lifting a 2L bottle with my wrists. I can lift it okay if I use both arms though. I've been trying to find alternate ways of doing things for years now, because doing it the "normal" way injures me. Maybe the diagnosis will get me treatment that will make me stronger or something🤞
Hi Izzy! Really glad I found your channel. Do you know if there is a genetic test for EDS? Specifically classical HEDS? I keep reading mixed information; some say there is, others say there’s not.
May I ask - are you supposed to press for example your finger to the most you can do, even tho it hurts a bit, or you are supposed to do it to the point you don't have to use any force? Thanks!
Hey! I've noticed you've done numerous videos on POTS including different types but i haven't seen you release a video on Hyperadrenergic PoTS (the condition i have..) anyway i was hoping you can do one on that mostly bc its extremely under-studied and has little to no research put into it.
I got tested on clEDS and I need some help with the confusing test results:
The medical assessment says: *An unknown,
heterozygous gene-variant of unclear clinical significance was found that can't be classified as pathological or harmless. Other abnormalities besides of that couldn't be found. In order to get sick from an autosomal-recessive disease like clEDS you need to have two
pathological gene-variants.*
Does it mean that I carry a possibly harmful gene-variant that didn't effect myself because I need to have two of these?
Hey! First of all, disclaimer: I don't have a medical degree or work in a medical field. I only have *some* knowledge of genetics, it's always safer to ask your doctor about it.
TNXB (Tenascin X) is a protein that is part of connective tissues. It is encoded in the DNA as the so-called "TNXB Gene". In order for the TNXB gene not to enable the production of the TNXB protein, it must be different from the "normal" TNXB gene. The TNXB gene has two occurances in the DNA (we'll call this allele; yes this is slightly inaccurate but better to understand). One of your TNXB gene alleles is abnormal but it's variant is unknown. This, however, does not matter for a potential clEDS diagnosis because clEDS is recessive, meaning that you need two defective alleles. I don't know whether it can be harmful but from what I understand, your DNA includes a sequence of the correct TNXB production instructions.
The information about how the TNXB protein is made correctly is only present once in your DNA. If it was not present at all, you would be diagnosed with clEDS.
Hope this helped you. :)
Hey! I think this is a great questions to talk about with a genetic counselor or geneticist! i understand clEDS to a certain extent, but im not able to interpret results or anything.
@@IzzyKDNA Thanks you both for your informative answers!
My geneticist told me that I'm carrier of a
potentially harmless variant and in order to get sick from clEDS I need to have two pathological variants so it's unrelevant for me but I'm still concerned.
Have you tried prolotherapy for your Eds symptoms?? I looked into it and there seems to be a well known clinic in Florida that specializes in hyper mobility in eds patients using prolotherapy.
Can you do a video on hEDs vs joint hyper mobility syndrome?
Korra Price I got you! Already on my list and hoping to get to it soon!
I’m just coming across this.
Hoping someone can help me find a Dr to give final diagnosis. I live near New Orleans. Every one of my Drs say they don’t diagnose it and do not know who to recommend. If by some chance someone comes across this comment and can give advice I would appreciate it so much!
Hi izzy! I have a question or 2 for you. So, I pass the criteria for hEDS along with other things with it like stomache issues. I tried talking to my doctor about it and she just wouldn't listen. She said no, I'm 100% sure you don't have it, and I won't send you to a geneticist for it. Her main reason was that I didn't have a particularly high pallet in the mouth. Is that a requirement? The high pallet? Should I see another doctor for another opinion?
Huh... I thought that I didn't fit the new criteria and that's why I wasn't diagnosed with heads, but apparently I do 🤔 my neurologist told me that they'd treat me as if I had it though, because there is so much overlap of symptoms and comorbities, so I guess it's not that big of a deal. Still, I may bring it up in my next visit, just to get some clarification as to why she thinks my hypermobility (+disautonomia+gastroparesis+IBS) is unrelated to EDS. I wish I had a more concrete diagnosis because it would make it easier to deal with other doctors, paperwork, etc. Unfortunately I guess I'm stuck with POTS and sucky joints for now
@@riley3984 yeah, I'm definitely bringing it up! Thanks for sharing :)
Also, I didn't know about the hearing loss. In my family we don't know where my issues come from because there are signs of my illnesses in both of my parents' sides. For instance, my mother is hypermobile. On the other hand, my grandma on my father's side has had to deal with orthostatic hypotension since she was a young woman (it honestly sounds like POTS to me but I don't want to diagnose her, obviously). She's also deaf. She started having some hearing loss and then suddenly one morning when she woke up she was completely deaf (I think she was around 60 at the time). Doctors have never found an explanation as to why that happened, so now I'm wondering if that could be related to EDS... It's all speculation, of course, but I find it interesting anyway!
I kinda need some help. I’m 15 years old and I’m about 95% sure that I have hEDS. I’ve had minor joint pain for most of my life but I’d never considered EDS until recently, I realized my shoulder has be falling out of socket and I meet the criteria. I’ve been wanting to go the doctor to see for sure but my parents say, “What’s the point of spending money to get a diagnoses, if you’re not having to much pain.” What should I do?
I have a question that you may or may not be able to answer. I am diagnosed with Joint hyper mobility syndrome as of right now but in process of being tested for EDS because 4 of my doctors believe it is it. But my question is with the joint issues specifically can their be “flare ups” like a period of time where they hurt more often like aching and stuff and where they dislocate a little easier?? With JHS and EDS I am unsure if those diagnoses have flare ups.
Random thought could you make HSD stickers or merch too??
Yes!! I tried to make the zebra sticker inclusive by making the second biggest word "HSD," but i dont have anything that's specific to HSD so i'll see what I can do!
@@IzzyKDNA Ekkk off to etsy to buy them because I did not look very close the first time!
I also wanted to NOTE that in not all countries that's HSD is an official diagnosis, so that's something that people have to be mindful!
i didn't know this! I assumed most countries would follow the ehlers danlos society criteria. Thanks for letting us know!
I thought over vEDS and cEDS was only two that show present in the genes?
Crying Hippy we know all of them other than hEDS! The ehlers danlos society details the mutations on their website if you’re interested in learning about it!
Izzy Kornblau last research update I knew was only vascular and classical can be diagnosed with a genetic test. So only hyper mobile now is the only one that can't be tested genetically?
Wow the gene mapping has come along way in last 5 years if so
Pat yourself on the back if you submitted your DNA to EDS research in Washington years ago
I gave up on meds and the medical industry before diagnosed and got back into it after only to find there is nothing except here take this pill and sorry I don't know what EDS is
I'm still in the same vote and living in north Americas 4th largest city with no doctor and was told today by another phone Doctor that EDS is not deadly
I give up
Hugs and Blessings
I know this an old video but i just had my test but this gentic dr was mean said all my heath problem is heds that i past but going tell my dr it just cronic pain because i havent seen a rhumertolgest sorry if spell wong also confuse me with the art leight part kept teen turn forward no backward no forward no sidwards got fusterated as lady told husband alredy they going say no even if postive tell him i know too much about my heath problem what you do if told this what be my next step ask for your help i watch alot your videos too
I just got diagnosed with HSD when I went in for EDS. I still believe I have EDS and he seemed to intentionally not mark off my soft and stretchy skin. He said it is but basically didn't want me to have a "bad diagnosis" and they are only diagnosing the severe cases at the moment. I have family history, disautonomia, unstable/ hypermibile joints, very frequent subluxation, very soft skin that is mostly stretchy. He said there was no proof of comorbidities existing. I have a lot of joint pain and feel like I deserve an EDS diagnosis. I feel like my PT that I was sent to see after my Dr. Appt for EDS was not taking me seriously until he accidentally went to lift my arm and my shoulder popped out. He was trying to tell me how great it is that I dont have EDS. I use a walker most days or my ankles will do the thing. So lucky to not have EDS tho. I'm so frustrated and I dont know what to do about it😔
Wow, it sounds like you're really really suffering. Based on what you said, I would see if a different physician would diagnose EDS - especially since you think you do have it. Misdiagnoses happen all the time.
0:46 People keep using Roman numerals. Why???
6:55 Top left for you, top right for us.
i think people just dont know that the roman numerals are no longer correct to use
@@mollymarino5974 I don't know if there's anything correct or incorrect about using Roman numerals. I just find them unnecessarily hard to read.
Yes
My doctor told me today that she thinks I may have HEDS, but the only way to diagnose it is through genetic testing. Is that how you got diagnosed?
I was today days old when I learnt that being able to manipulate the bones in your wrist, and knee are not normal… I thought everyone could move their bones… the more I read the more I’m like crap I may be right about having Hypermobile Ehlers Danlos despite no obvious family history - but of course mutations have to happen somewhere - maybe I’m the one who developed the mutation they are still identifying - unless it was my dad - I don’t know him so can’t ask him
Since then I’ve worked out on the alternative criteria to Beighton I score 8…. I need to jot this evidence down ahead of my assessment
My stupid luck I got 3 types of eds and 6 autoimmune disorders and stiff persons syndrome