EHLERS DANLOS and HSD Survey | SHOCKING RESULTS!

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?

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

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

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#autism #asd #eds

[amywhitehouse]

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.

[summersalix]

Ugh, how did I not see this survey?! I would have loved to participate!

[CF-wnce]

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.

[bobkmertz]

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 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 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.

[LecheVitrineUK]

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.

[Dulcimerist]

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.

[catmomlavender]

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.

[PetCrazzy]

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.

[julieroberts]

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.

[Zarathustran]

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

[NeighborhoodOfBlue]

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.

[zooh]

People with autism tend to particularly love to research our diagnoses which might draw people to your videos, it certainly drew me here lol

[victoriamyatt]

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.

[lindseym]

I think it’s awesome that you’re doing these studies & helping us to all learn more. Thank you!

[catmomlavender]

Izzy I'm a 40 y/o subscriber btw. You have a wide range of viewers 😁 I missed this study and bummed about it. 🤷🏼‍♀️

[Bee-cnhw]

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 💕

[MillsSkits]

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.

[juggy_hex]

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

[oliviasimone]

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!!!

[christinalindberg]

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.