EHLERS DANLOS and HSD Survey | SHOCKING RESULTS!
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- Опубліковано 23 жов 2020
- Finally! The results are in from my survey that was taken by over 600 people with Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD), and Benign Joint Hypermobility Syndrome (BJHS). They reported their chronic pain spots, Beighton Score, dislocation spots, and comorbidities. After many months of analyzing the data (some of which with the help of my professor Dr. Antonio Herrera), the results are in! We had some REALLY interesting finds!
hEDS, HSD, Hypermobility differences | Is HYPERMOBILITY NORMAL?
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The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.
#autism #asd #eds - Фільми й анімація
Just a personal theory (most likely totally wrong but something to consider), i myself have hEDS and Autism, and one of the ways i cope with my EDS and comorbidities is to research and learn about them, and one way of doing so is via youtube and connecting with other people who also have EDS. This video with the stats on EDS and Autism made me wonder if maybe im not the only one who copes by learning. A big part of my Autism is constant researching and learning to help me understand the world and myself, particularly when difficult things happen. So maybe a high percentage of people who completed your study have a diagnosis of Autism because they are more likely to seek out ways to better understand their EDS diagnosis in order to better cope with it than neurotypical people with EDS? Like i said, im most likely wrong, and i propbably havent worded this very well, but its an idea that popped into my head as i was watching.
I believe that you are not wrong. I think you've hit it
I have to disagree, I think you worded this very well. I also think you are onto something.
I do the same thing. People sometimes misinterpret it as obsessive behavior, but once I understand something and grasp ways I can mitigate negative things about myself as much as possible, that's how I cope.
I was going to make the same comment. Autistic people are known for special interests and are therefore more likely to be diving into the nuances of their medical conditions... Heck they might even be more likely to fill out surveys etc with a greater affinity for data and numbers than the average nurotypical person. I'm aware that this isn't always the case, but overall as a group it seems to lean that direction.
Uh. I’m autistic and heds, so is my son (he also has pots). We’re always looking for answers, like way more than “regular” people, so you may have something there
Autism and EDS.... This is one of those things that I really think the medical community needs to start paying more attention to. I was in my 30's before I was diagnosed with EDS but as a teen I was diagnosed with ADD and the Adderall was like a godsend to me..... hindsight tells us now that I probably didn't have ADD and that the Adderall was such an amazing medicine for me because it increased my heart rate which covered up POTS symptoms -- and that's also likely why it seemed like I had ADD. The story gets more interesting though because after my niece was born I kept to myself that I had this really strong gut feeling that she was somewhere on the autism spectrum. I think it was around when my niece was 3 or 4 that I overheard my mom talking on the phone and telling someone that my sister thought that my niece had autism (this is not my nieces mom but our other sister) and I was just floored. This sister is an elementary school teacher who works in special education. It was at this point that I really started reading more about autism and what I started realizing is that there is a lot of things that I completely identify with and, ironically, if we go up through my dad's side of the family where you can already see a clear path of EDS I've started to realize that there is also a lot of autistic tendencies. I honestly wouldn't be surprised if we aren't even looking at autism vs EDS vs hypermobility but that what we are looking at as different spectrums right now are actually just a single spectrum -- and I also think ADD is brought into that mix as well. If I can give a theory without any real medical citations that I could give you -- I think that the fact that our connective tissue is weak actually is a shared trait with our brains solidifying less. That is, an EDS brain may tend to retain plasticity through our entire lives allowing it to make new pathways. My grandfather had the strongest curiosity I had ever seen in an individual clear up until he died. He constantly had to figure everything out..... watching him "light up" with wonder at a computer mouse was one of the greatest things I remember. While I think he is a great example of this he is, by far, not the only one. Actually, I think you just have to look at the majority of EDSers... I mean, we say that we are constantly researching our condition because we have to be our own advocates to our doctors (and we certainly do) but I would have to say that most of us are just fascinated by it as well. All you have to do is watch your face in the video and how you light up talking about all this stuff. It's not that far away from someone with autism who have their focused areas of interest.
Thank so much! Your sharing helps me so much
You are right
So true do you think that stress in this soft brain makes alot if symptoms in central nervous system lost my mum last year to severe ms heds obvously autism to my grandfather.wqs the same he was like a young child until the end always interested he also had Parkinson's Inthe end nervous people get nervous conditions pain worst for me as most of us
When I was diagnosed HSD, the fact I DIDNT have prolapse was a big factor in the conversation. But i have POTS, MCAS, gastroparesis, tmj, chronic pain, and 7/9 beighton! Also autistic.
The fact that hEDS and HSD are purely clinical diagnoses raises a lot of questions for me. A different doctor could just as easily have diagnosed me with hEDS.
How are you now
@@tomsale5142 still vertical and ventilated. With less cartilage and an added epilepsy diagnosis. But, still here and doing better with medicine and motivation to be here for my kid.
Ugh, how did I not see this survey?! I would have loved to participate!
Hopefully I'll do this again in the future and you can participate!!!!
I missed it too! I’ll be watching more close for a new study survey 😉
Izzy Kornblau if you do it in the future include Tourette’s or other neurological disorders!!!
@@ticrific Ya I got EDS, tourettes, autistic, synesthete 🔠🔠all the syndromes
I wish I could have participated in this too!
This is really interesting. I was diagnosed as autistic, also ADHD. I noticed after I was diagnosed that a lot of the autistic women were complaining about various health issues that sounded strange. I have been going about my life with lots of GI issues and 'injuries,' that I thought were normal and other words things. My sister came to me one day and said she thought I had EDS and that she had it too and all the pieces came together. I have neurally mediated syncope and the POTs clinic think I have hEDS. I'm doing a master's degree in autism and for my dissertation that I'm just about finished with I did a qualitative study on if autistic women are experiencing health disparities particularly in relation to EDS and it's many comorbids. The women that were complaining about the strange health conditions, it was EDS and POTs and Gi issues and the rest. My conclusion is that autistic women are experiencing health disparities due to lack of knowledge on the conditions but also because of social bias and stigma against women and autism.
People with autism tend to particularly love to research our diagnoses which might draw people to your videos, it certainly drew me here lol
definitely a possibility! :)
When I was diagnosed with hEDS, my doctor said that he usually would diagnose his patients with HSD or JHS , even if they fully met the criteria for hEDS. The purpose of this was to help keep his patients from being denied life insurance and health insurance. He mentioned that many insurance companies don't distinguish between the different types of Ehlers Danlos, so they look at all people with an EDS diagnosis as having the deadlier vEDS and being a high risk for severe medical issues and death. In my case, I had already been diagnosed with so many EDS-related comorbidities that he felt that sparing me from having the official hEDS diagnosis wouldn't make any further difference in my ability to get insurance. My sister meets all of the hEDS criteria, but has fewer and less-severe EDS-related comorbidities, so she only got JHS listed in her medical records.
A Dr told me that he didn't like to give an EDS diagnosis as it would scare a lot of other drs & put them off treating patients. He then said that treatment for all hypermobility conditions are the same, so the diagnosis doesn't really matter. Personally I think he should put effort into educating other drs rather than giving inaccurate diagnosis to his patients.
My EDS diagnosis actually helped me get more things covered through my insurance. Companies were already denying me before the ACA so I didn’t care.
So so so very excited that you gave this attention. I found research of ASD and EDS outside the US over 2 years ago and have literally been screaming to get attention of the connection between the two. There is so many people I meet on groups that have a child w/ASD and H-EDS themselves, to be very honest it's felt cruel to deal w/ both in my life. I'm hoping that the future generations can recieve assistance.
YES!!
It's a bummer it's so expensive to get tested for asd. I've been wondering this myself. Another correlation is ptsd and eds. I find a lot of correlation there too (and makes sense with the way our nervous system is wired, ie dysautonomia)
What is ASD
@@sitprettybaby8188 autism or Autism Spectrum Disorder.
I think some dyspraxia and poor proprioception related questions where brought up during autism assessment. some of it could probably be shared with EDS
think i hear both groups bring up hypotonia at times.
"anxiety like" issues seems common in ASD, wouldn't be surprised if it's sometimes more like dysautonomia, but maybe that's just personal
stomach issues also seem common among both groups.
feels like a lot of potential issues during ASD assessment is completely ignored after getting diagnosed, apparently autism just means i'm bad at talking and planning things which doesn't really feel relevant.
feels like it's generally pretty common for people with ASD to have another chronic diagnosis as well, maybe just anecdotally though
It's funny how so many things are associated with autism and EDS. I'm trying to get a diagnosis for hEDS, but I've known I'm autistic for 4 years. Lots of the things I've associated with autism are also related to EDS. Like w sitting, sitting in weird/abnormal ways, poor proprioception, etc. And autism has some overlap with POTS and we'll, mostly with temperature regulation issues
I don't have EDS, I believe I found your channel via Jaquie's because I have POTS and because I'm on a wait list for a service dog and upon watching her videos on that I saw your videos and since you also have POTS, are my age, and live in NY I felt I could connect to you and started watching your videos. Even though I don't have EDS I still find myself intrigued and entertained by your videos even the ones solely on EDS.
As this video is 3 years old you probably figured out the answer to your question about why more people with autism click your videos, but just in case not it must be the algorithm doing its job recommending your content to people who watch autism videos. It was very informative, too. So thank you for it
Izzy I'm a 40 y/o subscriber btw. You have a wide range of viewers 😁 I missed this study and bummed about it. 🤷🏼♀️
this video is one of my favorites of yours. my senior year thesis was the study of porcine versus human digestive enzymes. if you ever need a research partner, count me in 💕
that's awesome!!! You might find this video that I did interesting if you studied human digestive enzymes. ua-cam.com/video/9yCeaMj5bpk/v-deo.html
Thank you for sharing your results! I am a 54 year old mom, diagnosed last year with hEDS, POTS and Gastroparesis. My daughter has the same diagnosis. We both have issues with anxiety and undiagnosed ADHD, I am also Dyslexic. My son does not exhibit all of the Hyper mobile, pots or gastric issues, however, he does struggle with the rest. He is also undiagnosed Mild autism. I found the connection so interesting! I am looking forward to hearing more about your study! Thank you for your effort and time.
I almost wonder if a lot of the autism diagnoses within pots/eds patients could be misdiagnoses. I only say this because POTS can mimic a lot of the symptoms of autism such as sensory overload and meltdowns because of it. As well as EDS causing your brain to flood the body with adrenaline forcing you into a fight or flight response. A lot of these purely physical symptoms can appear to be mental so it just makes me wonder. I know it's common for people to be misdiagnosed with mental illnesses before getting their correct POTS/EDS diagnoses, so I'd love to see data of these autism diagnoses and whether they are pre or post POTS diagnoses.
Speaking as an autistic person with EDS, Autism is a neurological difference, and it is likely that many autistic people also have accompanying physical differences (such as EDS and POTS) that explain some of our ‘symptoms’/experiences, but one doesn’t cancel out the other. Autistic people are poorly understood as we are under researched as *autistic people* and not just NT people with the ‘addition’ of autistic ‘symptoms’. I do not believe distress is inherent to autistic neurology any more than non-autistic neurology, and that our expressions of pain and ‘behavioral symptoms’ that are classified as what makes us autistic are actually surface level indicators of *autistic people* experiencing symptoms of *physical disorders*/pain/EDS/POTS. We would still be autistic without it, but it’s all connected, and it is a disservice to assume that these experiences are inherent to autism rather than conditions commonly experienced BY autistic people.
@@CD-uf1lt I completely agree, though I'd like to explain that I'm not assuming what you said in that last part, I'm just kinda thinking out loud because there is not adequate research out there that determines the answers that I'm looking for. EDS causes many neurological differences and changes brain structure, (which any people take for granted) and that's why I'm so curious about the correlation. There are people with both autism and these other conditions for SURE, but I am just wondering if autism is over-diagnosed in cases where EDS and POTS are misunderstood and the neurological aspects of those conditions are overlooked.
This is coming from a person who has POTS, EDS, autoimmune thyroiditis, a few other heart conditions, AND possibly autism. It's been long suspicioned that I have autism, but so many of my symptoms can be explained away by my severe dyslexia and physical disorders that we've put off getting a proper diagnosis. We've mainly put it off because working to improve my physical health takes up most of my time/energy. But a full autism screening is something I'm definitely working towards getting in the future.
wouldn't be surprised if autism could cause dysautonomia, only ever hear about ASD+anxiety or ASD+anxiety but inability to know about anxiety or something where they have dysautonomia like symptoms without anxiety, which sounds shady. if anything i'd assume anxiety might be misdiagnosed in some cases.
think ASD and maybe hEDS are very dependent on how it looks rather than the actual cause of it whereas other types of EDS is a specific issue with a cause which may not be well known on how exactly it affects something.
wouldn't really be surprised if some cases of ASD maybe could be a side effect of other conditions, i think a wide range of conditions appear more common in people with ASD
don't think it would be all that odd if neurodevelopmental conditions could cause dysautonomia or neurological issues though.
I got diagnosed with POTS at the age of 29. Just got diagnosed with Autism at 31. Now I'm looking for a doctor who will evaluate for EDS. Multiple people in my family have both. My sister who is a year younger just got diagnosed with all 3.
to add a little to this, I think you are incorrect but also that you are seeing something that's been buried by the way the diagnostic criteria for autism are framed, specifically in that they rely on a suite of behavioural symptoms, i.e. a collection of externally-visible outcomes.
when you analyse these separately from any assumptions around the person being autistic, most are clearly either deprivation/distress/trauma symptoms or typical coping strategies for trauma etc.
what this points to are adverse early childhood/ chronic adverse experiences that go unrecognised and become visible only through symptoms of the distress they cause... such as POTS/EDS
couple this with a genetically-inherited predisposition to certain other characteristics, eg sensory differences and monotropic thinking styles and you get a clear autistic profile.
this places things like EDS and POTs as causal factors and, if this is plausible we should see markedly higher percentages of autistic people who also have POTS/EDS versus POTS/EDS who are autistic, but also a noticably higher percentage of POTS/EDS people who are autistic when compared to the wider population. That is EXACTLY what we see.
As such, I would suggest that what makes an autistic person autistic is not what makes up most of the diagnostic criteria, that those criteria are what we see in an autistic person in distress/ traumatised, and that POTS and/or EDS are secondary complicating causal factors.
We can see similar patterns when looking at the prevalence of LGBTQIA+ people within the autistic community, in particular nonbinary and trans (60-70% of autistic people) - again characteristics that can result in anxiety, distress, alienation and harm during childhood.
In the case of POTS or EDS or being nonbinary, the widespread lack of understanding, notably among the kinds of professionals that tend to be involved, reinforces that confusion, misunderstanding, and what I call 'accidental gaslighting' - it is unintentional but results in similar experiences: 'you just need to toughen up, nobody else has a problem, you were fine with it yesterday, don't be silly, that doesn't make sense, what's up with you this time?, ugh... this nonsense again...' etc etc etc.
The part about autism is really interesting to me bc I def have some kind of mental illness, in a month I will get tested for ADS (I also thought about autism before) and now I got problems with my elbows and knees. I’ve always been a bit hypermobile, but I’ve never heard about eds before, but after watching a bunch of your videos and searching for info in the web, I’m pretty sure I have it. And so it could be also more likely that I’m on the autism spectrum.
It just all sums up. 🤯
I think this really helped me with my doubts about having hEDS. I've been diagnosed by two different drs but still the doubts lingered. Now I feel like this is where I fit in. I recently had a pelvic organ prolapse and it was one of my most emotional diagnoses. I had it repaired and had a hysterectomy with the repairs. It's what I wanted but still, so emotional
Awesome video 💕 you really inspire me to make a youtube channel
How do you know if you have a prolapse?? I mean I kind of understand what a prolapse is but unsure of the symptoms of one. I guess it hurts like crazy??
@@sarahb.6475 it was really painful at first and then the pain became more mild. There was blood all of a sudden and I...felt around. I could feel my cervix had dropped. There was more vaginal discharge. Normal discharge but just a lot and I hear from other women that it does happen for them as well. I skipped stage 1 prolapse and had gone to a stage 2 overnight. Within another 2 weeks I was a stage 3. I also had other problems because it was also my bladder and bowel that had dropped. Essentially just had a hard time emptying both. It came with a lot of uncomfortable conversations but after a while I just try to talk more medically about the problem instead of adding my emotions to it 😅 soooo sorry if it's tmi 😖
I know this is a few years late, but I’m getting tested for ADHD and my cognitive neurologist says that she has a lot of patients with EDS. Her thoughts are that connective tissue is one of the first things made in the development of embryo into an actual baby, and then that connective tissue is used in every system of our bodies. She thinks that when the brain starts getting made there could be differences because it’s being made with faulty connective tissue. And if that causes social difficulties we call it autism, if it’s effecting focus / attention we call it ASHD, if it’s effecting visual / spatial we call it a non verbal learning disorder. Obviously, all of those conditions have more criteria / specifics needed for a diagnosis. But that’s just to give an idea of why a connective tissue could cause neuro-developmental disorders.
If you do it again can you also include complex bone systems or back problems which can be caused by eds like scoliosis, kyphosis and many others 💕
Also vertebra fractures are seen to be increased in eds so I think it would interesting to add that on
My super flexible daughter has Scoliosis. She and all of her 3 siblings have hyper mobility.
@@MK-mj9gx that's crazy me and my 2 other siblings are all hyper mobile, I'm the only one with scoliosis but unfortunately it went the other way for me my back stiffened up and causes me alot of pain so I had to give up being a rhythmic gymnast 🥺😂
My EDS watching this 👁👄👁
Will you be publishing your results in a journal??
I'm so glad I got to be a part of the survey. Been diagnosed with EDS (hypermobility) for almost 5 years now, and Asperger's since 2011.
My daughter and I both have EDS and autism. We are still working on clinical diagnosis, which has been de-railed by COVID, but yes! I do have diagnosis of Gastroparesis, chronic pain, prolapse, several kinds of headache, and abdominal pain with nausuea.
I would have filled it out but I didn’t have an official diagnosis for any of them. I just got mine a couple of weeks ago
I totally understand! I looked at the survey, but am pretty sure I didn't participate. I was unsure how to reply to some things since I could have them, but haven't been officially diagnosed (though I've been diagnosed with hEDS and POTS). And answering as if I didn't (if I do, undiagnosed) I felt might throw off the results. It was great to see there were so many people able to respond more definitively about their diagnoses. :)
I'm hoping that the next one is late enough so I'll have a diagnosis by then
I think it’s awesome that you’re doing these studies & helping us to all learn more. Thank you!
This was really fascinating info.! It must have taken a lot of time to work with all the data collected. Thanks for your research, Izzy, and to those who filled out the survey! I think it would be really interesting to hear more about the results.
I'm so happy you enjoyed it!!!
This is a GREAT study Izzy! Thanks so much for putting this together, I'm so impressed!
This is such an incredible video Izzy! So interesting! Well done this is so much work and such an incredible study I hope you can share your results and do further work!
This is so interesting and eye opening to see. Just seeing the raw data for the survey is super cool in terms of our collective experiences with EDS/HSD.
That’s a fascinating study Izzy. I’d love to see all the data.
Hiii! I’ve been waiting soo long for this video, Thank you for making it! 💕
YAYYYYYYY Hope you like it!
Wow this is all so interesting. I hope you do another survey as I’m sure you will have lots more followers now that can contribute!
I was diagnosed with hyper mobility syndrome with my mother, father and brother 12 years ago at a specialist rheumatology hospital. Since then as studies developed we thought we were more along the EDS range due to our severe comorbidities. It wasn’t until my 7 year old daughter was referred to the same hospital to diagnose her with hEDS that they asked me to go back due to the significant family history. I’ve now been re-diagnosed with hEDS with possible vascular fractures due to previous vein collapses causing hemiplegic migraines but luckily no hemp rages or ruptures. my brother is now having genetic testing for Marfan’s and EDS as despite surgeries on both lungs to stop them he still keeps having spontaneous and tension pneumothorax. Also my niece through marriage has kEDS - she is 5 and only just able to walk using a walker. The thing we all have in common too - Autism & ADHD, I think it must be more common that we think as I really think it should be looked into more.
If you do another survey I would love to know if the data is different from men to woman, and if woman have hormonal or reproductive organ issues, for instance Endometriosis, PCOS, PMT, PMDD, Menorrhagia (heavy menstrual bleeding) or Dysmenorrhea (painful periods) and if they have had children yet then very quick labours.
For both my children I went from 3cm dilated to 10cm dilated and head coming out in 5-8 minutes! They didn’t even believe me that I was pushing it was that quick, I was told after that was due to EDS! I’ve also had severe gynaecological issues since a teen (PCOS, ENDO,PMDD etc) and ended up in a medically induced menopause at 26 followed by a full hysterectomy and ovary removal at 29.
And being in the menopause (especially as I can’t have HRT) has significantly worsened my hEDS symptoms, the same is said for my mum, so it would be interesting to know if others that have gotten worse due to the menopause.
I would love to take part it a survey if you do another one, and I would get my family to all take part too. Keep up what your doing, it’s amazing!
I'm wondering if people with ASD are more likely to look into an EDS diagnosis... that's just a thought that popped into my mind as a person who has both ASD and hEDS.
Or maybe people with EDS are more likely to look into an ASD diagnosis.... ah the human mind and body is so confusing
Ooh, maybe. Especially because if you're diagnosed with one there's a good chance that you had to fight for it, or you interact with people who had to fight for a diagnosis. Therefore you already know how to deal with people not believing you, having to research it yourself, and that professionals don't know as much as people with it. You probably also pay more attention to your body and symptoms. I realized I was autistic in 2016 and got diagnosed a year ago. So I spent years thinking about everything I did and my symptoms. It was very easy to switch that over to hEDS. Now I'm thinking about anything I do/experience that will help me get a diagnosis for hEDS.
This has absolutely amazed me I’m about to go in for my genetic test and I’ve always thought I had ASD because I was diagnosed with adhd and social anxiety, and my sister is on the spectrum and has scoliosis and was born with club foot like me if this is true it would help us so mush we have always wondered if this was due to genetics!!!
I believe this would be likely - autistics are more likely to experience difficulties with proprioception, and so are more likely to have a higher rate of injuries than the allistic population (for example). As there are several other co-diagnoses which are more common among autistics, we're also more likely to e.g. have specialist visits / hospital stays due to these conditions, and are more likely to have incidental findings that either lead to an investigation into an EDS diagnosis, or receive an EDS diagnosis itself.
And that's all without considering the many social/societal aspects, such as autistics being more likely to be dismissed by doctors & feeling we need to pursue our own investigations into potential causes of pain etc.
I did. My allistic/NT family with EDS had no interest in figuring it out.
Whilst researching my symptoms ( suspected heds) and joining up with others who have eds ( mainly heds) many within the group also had Aspergers ( which i have also). I think you've discovered some amazing links with your survey and was really interesting to hear.
This is such a great video filled with amazing info! I would love to see more!😊 Great job Izzy!
thanks so much Emily!!!
One of your best videos yet Izzy!!! Proud of you!
love you!
This was such a welld one and informative video. Thank you for putting so much effort an time into the research and video
Thank you!!
Hi Izzy this was a great video thank you so much!! I am 47 and have really enjoyed your channel. 😊
Maybe I can take the survey next time. This information is fascinating. You can really see on your graphs that our symptoms are not as rare as doctors want us to believe they are.
Great video. Yes I would love to hear more. If you do another survey I think it would be interesting to see if there is a sub-group that don't have stretchy skin. It might be what makes the difference between those who have co-morbidities and those that don't.
Will you ever do another one of these types of surveys?? I wasn’t diagnosed at the time of you doing this one and I’d love to get to participate
I totally can!
@@IzzyKDNA yes please do more surveys! They are fun to fill out and so interesting to hear & see the results! Your video has taken my mind off some very stressful things right now, so it's just what I needed. And the comments on this one are just fascinating! I'm 48 by the way. 😁
Thank you so much. Took part in the survey and found the results really interesting. Another video in it would be great.
Ya! I'm so happy you found it interesting!!
Thank you for all this work! It’s seriously amazing. Your videos are all so informative and research/experience driven. I feel like I always learn something new watching your videos!
THANK YOU SO MUCH!!!!! I'm so so so happy you learn something new from my videos
Good work! That's esciting news.
Didn’t see the survey, have now subscribed 💖 I’m 36, have HEDS & POT and Most of those symptoms including Prolapse, Chronic Fatigue & Chronic Pain x the videos are great! So helpful to share with my family !
This was such an interesting video!!! Definitely do another going deeper into the study with the info that wasn’t included in the first! Also what was the overall sample size of this study? Do you think you’d ever repeat this study later on in your career? It would be interesting to compare the two!
I find your videos so incredibly validating. I had to write an email to my school's disability office today asking for some accommodations that I hadn't considered before moving to college and it was such an emotionally taxing experience. Watching your videos and especially this one makes me feel a little more seen and makes me remember that the problems I'm experiencing are real and valid. Thank you so much for making these videos!!!
I'm so happy to hear this, Olivia!
This is very interesting. I guess I’m a little older than your average viewer, but my kids found your videos and feel seen, so I’ve taken a look. I would love to see you continue to collect this data and update this video from time to time. That would just make your data more statistically significant. Also the high rate of people with ASD watching your videos is probably because people with ASD are always studying and trying to figure out themselves and how neurotypical behave and function. Sometimes that has to do with trying to fit in, and some of that has to do with self awareness
Hey Izzy. First lemme say you're a very smart young woman. I listen to how you speak and of course as most of us do, we relate. No matter the age or location. I'm 55. Lol
I was diagnosed when I was 36 after we were sent to Cornell genetics for my son. And then we saw the full picture come together. It's still coming together. Love your channel and I think your plans on a career are awesome. Thanks for everything.
So interesting! Thank you for doing this!
I'm so happy you found it interesting!!!
This is such a great analysis and very interesting survey results! My only additional thought is that it'd be so rad if you could explore ASD a bit more, specifically around language that #actuallyautistic folks use. Would love to discuss if you need resources!
I just wanna say I appreciate you and what you are doing you really helped me
This WAS AMAZING I LOVED THIS VIDEO ONE OF YOUR BESTS!
thank you so much!!!!!
So much great information ❤
Yesss please do a part 2! So interesting 😍
I have hypermobility syndrome and I took this. I get alot of joint pain particularly in my ankles. I wear insoles and do strengthening exercises. Hypermobility is not fun but people in my primary school used to bully me for it and call me a liar even though there was living proof that I have it. Some of them said they had it but nothing showed that they did and alot of them couldn't even do a split. I hate hypermobility but I'm so happy there's people out there that support it
1st child: can't do the side to side split, but can do the forward and backwards split & put ankles behind head. Toes & fingers bend WAY back too, wound up with Scolosis.
2nd Child: shoulders both pop out, fingers bend WAY BACK, oldest 2 have early stretch marks.
3rd child: can put ankles behind head, toes can touch ankles a few years ago, & maybe still can, can do a regular split since birth, fingers bend WAY back.
4th child: fingers bend way back, can put ankles behind head, can do a split since birth, & can do a headstand & split that makes it seem like child is hinged backwards!
The point I am making is that they also have other symptoms that certainly make it seem like they have EDS, & 2-3 will be going to the doc to be tested for it. (Older child doesn't live with me because of being an adult now.) Anyway, all have Hypermobility, but in different ways!
Great video. There’s so much research that needs to be done. It would be cool if there was another type of EDS from HSD and I am sure in HSD there are a few conditions that will come from there as more is learned.
totally agreed!
I’d love to see more! This is awesome! I saw a dr who is an EDS “expert” on Friday. I’m 35 and got the official pots and MCAS diagnosis and my hEDS confirmation. I was diagnosed with EDS on August 5th by a highly recognized genetic doctor in Massachusetts but it was helpful to have a conformation! I’m setting up a great team for my care and watching your videos helps so much since I love learning about what’s going on!
I’d love to do a survey in any upcoming studies you have! I’m still at the beginning of my journey so it feels so strange. New medication, braces, and such but we are going in the right direction!
Thanks for all your hard work!
Ashley M
I’m also in MA- who did you see if you don’t mind me asking?
Absolutely! I saw Aubrey Milunsky at the Center of Human Genetics in Cambridge.
I saw him too just yesterday! Glad to know I’m in good hands
I can't remember if I said his before -- but my referral to the HOPE clinic (EDS clinic in Toronto, Canada) DID ask about Autism so someone's doing the research
This was SUPER SUPER interesting!!! Thank you so much! I'm going to consider pursuing a diagnosis...and one for my son.
This is fascinating! I think it was important that you brought up the point comparing HSD with hEDS. Interestingly enough, I have had an opposite experience to what you described. I was diagnosed with HSD (almost fit the criteria, but not quite) and I have subluxations, POTS/OH, Gastroparesis+IBS, chronic migraines, and possibly MCAS. My geneticist was adamant, however, that since I did not meet the criteria for hEDS that I have HSD. I bet each doctor is different though in what they deem acceptable for diagnosis 🤷🏻♀️
Yeah I think technically you’re not supposed to diagnose someone with hEDS who doesn’t fit the criteria and instead give them an HSD diagnosis even if hEDS symptoms are obvious. But I’ve heard of people still being diagnosed with hEDS without passing fully. Hopefully this won’t continue on for long. Head doctors from the eds society have said that they are trying to find the gene and that’s why they are separating anyone who doesn’t fit the criteria right now. But that HSD should be treated exactly the same as hEDS 😘
@@IzzyKDNA You couldn’t have said it better! :))
This was so cool Izzy thanks so much
Thank you!!
Cool video) Thanks for the quality video! Good luck to you )
Fascinating survey! Amazing work putting this together, and YAY for a clip of mine bein' included in the video~ I wonder if ADHD is also common amongst HSD/EDS?
I checked and I believe it showed exactly average ADHD frequency when compared to the rest of the population! :)
That was cool to see those results. I would love to see a video with you going to more detail and it would be nice to have a "survey" that people can take that even if they don't have EDS/POTS/Gastroparesis etc can take and maybe they can click on different symptoms they get whether it is all of the time or even if it may be random or part of the time? There are times that I have felt like I may have some of these symptoms and with my history and what I have gone through while getting the diagnoses that I have gotten, it would be nice to find out if I may have one of these conditions/disabilities even if I may not be able to get it through the regular criteria that a doctor would give me or how close I could be? If I could get those results and take to my doctors maybe they could do some other types of tests in different ways to maybe confirm what I believe could be true? For example, let's say that I was to have EDS/POTS/Gastroparesis but because I couldn't pass all of the tests the way that the doctor's handbook says then I would never get the diagnosis I should get.
P.S. On another note, I was wanting to know what you are going to be doing for Thanks Giving and Christmas since this COVID-19 has hit and how are you going to do it this year?
Omg love love love this. Yes more please! I wonder how this would be enhanced with genetic testing, like if people who had been genetically tested for EDS knew exactly what their collagen mutations are and could put it in with this, that would be so interesting, and also how that would tie in with the new gene mutation they have found for hEDS.
Also, randomly, have you ever been tested for autism?
Totally that'd be so cool! And no I haven't - I don't have any autistic traits
@@IzzyKDNA How do you define autistic traits? Would you consider yourself neurodivergent or highly sensitive?
None of this is boring! I'd love to hear more.
I would love to see more videos about the results! So interesting!
You really should write these as an medical articles! It is very extensive survey. I really had fun answering.
You should also to a video about the rest of the statistics. Love your videos 🌸🌸
As somone who has hEDS (no genetic testing done) and is autistic, I can see why your videos might cater towards an autistic audience. Many people in the autistic community speak out about not being heard by doctors or taken seriously, and the same can be said for the EDS and POTS community. Due to lack of information given by doctors and lack of awareness, I can see how this can be a topic that an autistic person might latch onto--like myself, especially since of the comorbidity rate being higher for EDS in an autistic population.
I can't speak for everyone, especially sine all autistic experiences are different due to the variability on the spectrum, but a lot of autistic people LOVE to research all of this information. It brings together the puzzle pieces and is information that is available to the general public by someone who is entertaining and wants to explain these ideas in ways that are digestable by the public!
This is a really interesting video. I keep tell my doctor I am falling apart but have yet to get a diagnosis or referral so I am currently in limbo. It amazes me how many different conditions show up in people ith EDS and similar conditions.
Loved that you did this. My doctor said I probably have hEDS after I told her all my symptoms and licked my elbow (she freaked out about that). I have gastroparesis.
i’m curious about stats on elbow dislocations! love this
I got a late diagnosis of ASD almost 2 years ago and then a few months later I got my hEDS diagnosis. So interesting.
Hi. Thank you for this video, I found it really fascinating. I wasn't diagnosed with heds until I was 30, 2 years ago. I am also autistic and wasn't diagnosed until only 5 years ago. The notable statistical difference in the comorbidity of autism and eds from the general population is very interesting. I've come across this myself. I remember going to the eds conference I think it was, online, they had webinars about autism and adhd, only just found out I qualify for that too. It makes me want to research and understand why. If I could do research myself I would lol. It sparks my curiosity so much and makes me want to learn more.
This is really awesome! Congratulations! Out of curiosity, did you verify the diagnosis of these people somehow? Unfortunately I can see viewers wanting to take part in something you're doing(obviously with no ill intent), regardless of any existing conditions, and simply reiterating what they know or think you want to hear and severely tainting the results.
no, there's no way I could really do this :( However, I did have a category that was titled "suspected EDS/HSD" and hopefully most people without a diagnosis put that.
Another reason that people with HSD and BJH mayyyyy be diagnosed with POTS less is that there are so many conditions that can cause dizziness/lightheadedness and since EDS is well-known to be specifically highly comorbid with POTS and also EDS is a lesser-known diagnosis, people with doctors who know about and diagnose EDS may be more willing or likely to recognize that dizziness in such people can often be attributed to POTS.
Yay
Idk how but I totally missed this survey I would have loved to take part . It was interesting seeing the charts
Good job Izzy
ah that video w the dislocating jaw is exactly what I have! thats awesome I never see anything similar
This is so interesting! I wish I saw this before to participate!! I love this. More people need to study the connections between neurodevelopmental disorders and EDS. I go to tourettes camp (not anymore though. I’m gonna be a counselor next year) and so many of my friends have EDS, HSD, or lots of hypermobility. There’s basically no research on it but I feel like there is a higher percentage somewhere. Either people with Tourette’s are more likely to be hypermobile or hypermobile people are more likely to have Tourette’s is my guess. I wish people researched this more! When I got diagnosed my mom mentioned it to the geneticist and asked if there is some sort of correlation and he said not that he’s aware of from any research but maybe from the other side (as in people with Tourette’s might be more likely to have it) but he didn’t have a real answer because there isn’t any research on it, and Tourette’s isn’t his specialty lol
That's so interesting!! I wish I had included Tourette's in my survey :)
Hi Izzy! I completed a similar survey with about 550 participants, as well as one for gastroparesis. I am a data analyst with EDS and gp and would love to compare notes!
I hope you are planning to share your results with the EDS groups and .org.
That was a lot of work, lady!! Thank you for the information.
Thank you! I might share some of it, mostly the parts comparing HSD and EDS. But since there's so many confounding factors, i don't think it would be worth publishing 😭
It may spark some research and start people thinking. No need to publish! You’ll have lots of time to get things published🖖🏼
I’d love you to show the data from the people who have POTS, how many have Gastroparesis etc. and for a future survey, I’d be very interested in knowing how many people with Dysautonomia (not just POTS) have EDS or hypermobility, I have struggled to find this statistic anywhere. My POTS symptoms started years before my significant EDS symptoms did, so I’m curious.
Hello! So I was watching your video and, as someone on the spectrum with EDS, had a thought about why you might have gotten the results you did for ASD/EDS correlation. This has a bit of exposition (sorry!) but I wanted to make sure I explained it well. A large majority of autistic people have 'special interests' and these interests are able to fluctuate over time. Everyone with autism has a different experience with special interests, but many find that they have a small number (1-3) that last for a long period of time (or even their whole life) without changing while also having a couple fluctuating special interests where we become intensely interested in a topic for a short period of time and then lose interest completely (though sometimes a short-term SI can become a long-term SI). From talking to other autistic people in the online community, I've noticed that it seems to be a very common occurrence for autistic people to have autism and related topics become a temporary (or even long-term) SI after learning about it and realizing that they are autistic through research and/or formal diagnosis. So, I wonder if a possible explanation for your results is that people with diagnosed autism learn about their EDS/related condition(s) and it became an SI, leading them to do a lot of searching on the topic and ultimately find your channel (this is how I found your videos too). Anyways, sorry for the long read, I hope you'll let me know what you think.
Very interesting!!! I'm 27 and I'm a late diagnosed/identified autistic woman last year September at 26. I currently think I have Ehlers Danlos syndrome as have a lot of pain that's chronic and other symptoms of it.
This was so interesting! I'd love to see more videos like this. I'm quite the nerd when it comes to statistics haha
Yay! I'm so glad you enjoyed it!
When I was in my early 20's my wrist hurt the most. In my late 20's it was my feet. At about 48, my hips started hurting, & often hurt worse than my other ailments that I still have from long ago. At about 49 my right shoulder started hurting, then a few months later my left shoulder became a Frozen Shoulder, but oddly after only about 3-4 visits to a PT, & some Diclofenac, my Frozen Shoulder got much better, & I got my range of motion back, & I can scratch my own back again! It seems to me what hurts the most can depend on age, and the activities of the person.
I would have participated too if I'd have seen it! I was diagnosed with (FND and CFS first aged 40) hEDS (and Fibro in same appt) aged 41, POTS soon after, ASD aged 43.
I had to self-advocate to even get these diagnoses, thankfully with a supportive GP. I had an emergency hysterectomy after my only child was born 12 years ago, they didn't know why my uterus split but now I know it was due to my hEDS.
Only dislocated knee and thumb, possibly rib. Lots of subluxations though. Also I have OA in knees, possibly hips, lower back, neck. Migraines, skin sensitivities and allergies... the list goes on!
12:27 It's probably because some geneticists are now refusing to see people who don't have certain indicators like prolapse for evaluation, diagnosis, and treatment.
I asked in a separate comment if the 606 responders were diagnosed by a medical professional. At U of M they won't see people who are suspected to have, or diagnosed with, hEDS HSD, BJHS, etc. without having certain other indicators. Prolapse and blood vessel issues seem to factor in a lot.
Prolapse without predisposing medical conditions is one of the criteria for EDS diagnosis. Which is to say, anyone with prolapse is then less likely to be in the HSD group - so it's not surprising that the HSD people didn't report prolapse.
I was diagnosed with hEDS after my POTS diagnosis, when my doctor said my POTS was caused by stretchy veins, because he noted my hypermobility. I think it did help my case, getting the POTS diagnosis. I also suspect I could have mild autism.
In future, you could include whether people have had a hernia.
I have hEDS and I have a beighton score of 9 and dislocate literally every single joint on my body very often. I also have pots! I got to the ehlers danlos clinic at mayo Jacksonville!!
So, I have autism, and I only search about Eds because is a very commom commobidity with autism, and suprised 🎉 Now I'm pretty sure I have Eds as well, it explain so much about my physical issues...
I passed the criteria for Heds, but haven't confirm with a doctor yet...
Turns out I do have hEDS! Thanks for making these videos Izzy!
Something interesting relating to the correlation of Autism and EDS that I'd love to throw out there is the added correlation of EDS and ADHD! It's not really surprising when you think about it- my best friend has autism and I have quite severe ADHD and we see a lot of similarities to each other. I've even seen some people refer to ADHD as "diet autism" even if that has no real standing in the medical field. Also, MCAS sucks so so much. It ruined basically three years of my life before I was able to get it under control, and even then it was misdiagnosed as "freak allergies." Super super sucky trauma :p Anyways, I loved hearing about this study! :)
as an engineer i loved the analysis of this!! stats is so fucking sick
Here in my city doctors won't diagnose EDS unless you have a POTS diagnosis. That's what I was told. And also from what I understand the POTS has to be pretty severe to get that diagnosed..and my primary never even heard of joint hypermobility disorder or anything in that category. 😔 Meanwhile my gut is getting worse and I'm losing weight like crazy. I'm 10 pounds underweight now... maybe I'll get gastroperisis diagnosed first?? I did your survey and I do have autism. I really enjoyed hearing the results of the survey. It's fascinating how many have autism and which conditions go with which type of EDS. I'm a lot older than your usual viewer but you're the only one who has given me a good idea of what my mystery medical issues really is!! I didn't even KNOW I was hypermobile until I started taking yoga class in 2018! I was 46 then. So yes, you can be hypermobile most of your life and have no idea that you are. I think my mother was most likely hypermobile too and died being clueless about it. She had all of the same weird symptoms that I have (which is celiac plus what is most likely Pots and gastroperisis). I'm sure she was autistic too. Oh I did not know I had autism until this past summer when I was diagnosed!
doctors won't diagnose you with EDS unless you have a serious medical complication, and will just tack on the HSD diagnosis to not look further.
That wasn’t the case with me. It took over a year, but I was diagnosed without any serious medical complication.
TenaciousZebra wow. It took me years to get a diagnosis and I’m impacted a good amount but not severely. It’s interesting how different it is in various areas. I’m wondering, where are you from?
@Sarah Wills wanna know what's funny? I had the opposite experience as you with diagnosis 🤦♂️ I have 3 hernias currently (and born with a severe umbilical hernia that needed surgery at age 5) and a few prolapsed organs (one so bad it required an ileostomy) and I STILL had an incredibly hard time getting a diagnosis bc I hadn't broken any bones or dislocations, despite being hypermobile, having subluxations, osteoporosis, numerous injuries, and so many other criteria. It really seems to depend on who ya see....idk,its crazy. It shouldn't be so difficult. Too many health complications can occur if not properly diagnosed. I'm so sorry your experience with this has been so frustrating too 🤗
@@ticrific I just talked with my doctor and she’s sending me off to a geneticist to get my blood taken I was very surprised I thought it would be way harder am nervous because I was born with clubfoot and I have an early onset of varicose vein veins so I’m praying it’s not veds 🙏🙏🙏
this wasn't the case with me because i passed and had some comorbidities, but i know people who have passed and don't have comorbidities and their docs diagnose HSD, even when youre not technically supposed to do that....there needs to be more awareness amongst doctors
This was really interesting :) I'd love a video on unspecified Ed's as I havent heard about it before
Yay I'm so happy you liked it!!!! With the unspecified EDS group, I actually just made up that title because there are people who are diagnosed with EDS who don't fit hypermobile EDS criteria or maybe they fit it but it's obvious that they have something else going on, and their EDS type isn't yet specified by docs!
Thank you! I’ve always said that they’re linked. I’m autistic and have been diagnosed with hypermobility (but am under investigation of Eds as I have so many of the symptoms/Comorbid conditions but the uk don’t like diagnosing it so it’s taking a while) and so many of my friends on the spectrum, all baring one, are at least hypermobile. I feel like it’s something to do with our brains having the same elasticity? I don’t know but there’s something there
You’re totally right the U.K. does not want to help anyone with EDS
Very interesting!