Ehlers-Danlos Test On EDS vs. Non-EDS Person

EDS / Ehlers-danlos syndrome ... What does it look like when someone with and someone without EDS is tested on the hypermobile EDS diagnostic criteria? Ehlers-Danlos syndrome (EDS) is a genetic connective tissue disorder that is estimated to occur at least 1 in 5,000. EDS is a painful condition that causes joint hypermobility, dislocations, dysautonomia, poor wound healing, stretchy or velvety skin, and so many debilitating symptoms. Please consider subscribing if you'd like to learn more about this condition and its comorbidities like POTS!

*****OOPS I MESSED UP AND RENATA DOESN'T PASS THE FIRST CRITERIA LOL 😬. She would have needed 3 more points on the Beighton Score. AND I FORGOT TO INCLUDE THE KNEE HYPEREXTENSION 🤦‍♀️🤦‍♀️🤦‍♀️

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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Renata's new song "Running With Knives" is out on December 6th!!
#eds #ehlersdanlos #hypermobility

[ijustrealllylikecats]

What's odd to me is having such soft, elastic, and stretchy skin, but being COVERED in stretch marks. 🙄🤷🏻‍♀️

[funerealephemera]

This is wild. I got all 3 criteria. I'm in my late 30s and have been dealing with hyper extending joints and dislocation since I was a kid. Like... In the past year I dislocated my knee cap and my little toe, but I've been dislocating things for so long that I just pop them back in, ice them, and move on. I don't even call my doctor any more...

[BirdSeedForSpeed]

I thought I was the only person with eds that don’t have hyperextended elbows lmao good to know! My skin also isn’t as stretchy as some people’s. Mine is very mild and it’s mostly my lower joints that are unstable tho. The chronic pain is the worst part of it

[AnoukhHellstream]

when you pass all three and begin to wonder that maybe thats why my knees and shoulders keeps dislocating. currently laying in bed with a dislocated thumb and no idea how it dislocated.

[charlykatbat]

I don't have the stretchy skin, but super soft skin, to a point where several people have pointed it out again and again (for example my tattoo artist, who's in love with how soft my skin is) - got formally diagnosed though, and it was so relieving to finally know why my joint would randomly pop, or sometimes I'd be in so much pain that people told me I "sound like a grandma".
It's nice to know you're not insane or broken.

[jordanleighwheatley]

When you asked her the chronic pain question and she didn't know, it made me so sad for my hEDS self. You KNOW when you have chronic pain and I just wish I could know what that feels like.

[Kristen_H]

You are amazing! I am very concerned that my 16 yr old daughter may have EDS, and I have been watching your videos. You explain everything so well, and I really appreciate the information! Thanks!

[catalania-abby]

I've always wondered what the bumps in my heel were! Cool to know they have a name

[puggirl]

My new physical therapist has validated my hypermobility. The test you gave was interesting and I had enough positive answers to wonder if I should get tested by a pro. I first dislocated my kneecap at 14 and again at 23. I didn't know dislocation was a criteria. I remember my orthopedic surgeon, after my knee surgery, saying that I had very soft velvety skin while telling me to avoid sports that require knee pivots. I have a high narrow palate and TMJ but again didn't know that was part of the criteria.
Now that I'm 60 some of my joints are injured so aren't as flexible as when I was a bit younger but I can still flat hands on the floor without warming up at all. What I notice now is that my SI joint is overworked and over mobile and unstable causing tremendous pain. It's all very worrying. My Grandmother had severe pelvic prolapse and had surgery 2x for it. My Mom had a bad knee but never told me about what it was. This is all very concerning.

[lissajaynefw]

I’ve had a battle with my doctors here because we can’t afford genetic testing and they won’t make my diagnoses official even though I pass all the criteria arrrgh

[troymorene]

Ok hold up.... now I’m starting to think I need to get checked up and see if I possibly have EDS... a lot of these I was positive for... ESPECIALLY the dislocation of a joint... My shoulders dislocated over 25 times in the past 4 years!!!

Also... My wife has EDS and I’m for sure going to have her subscribe to you!! She’s wore that EXPENSIVE knee brace a couple times, after her knee dislocated and her ligaments wrapped around her kneecap... Gah, I could write for days with what all has happened to her... Breaking EVERY SINGLE ONE OF HER FINGERS, Joint pain every day, etc etc... I’m so glad I found your channel!!!

[adamslaura]

Just wanted to thank you for this video. After having some clues I might have EDS, I found this video and it definitely helped me make up my mind to talk to my doctor. You break down the criteria on a very understandable way, and I appreciate it. My doctor highly suspects I have it, and is sending referrals out for me to get formally diagnosed (not sure where yet, as most rheumatologists in the state refuse to see EDS patients). This is some great info, and I hope you keep making videos like this.

[BuzzingBee]

So, the other day I decided to test my best friend and she scores higher on the Beighton score than I do! I have EDS and I really think she does too. She has even more complications than I do, but she's not had any dislocations or loose joints. She has gastroperesis, epilepsy and many other conditions that are often related to EDS. So, now she is looking into genetic testing for EDS. They have been suspecting CF because of her heavy lung involvement... but that may be EDS related symptoms too! Thanks for the video, Izzy!💗

[abandonedchanneld]

This popped up in my recommended and Physical therapy has been literal hell for my arthritis, nobodies ever brought this up but my shoulder dislocates constantly as does my toes and I pass most of these-
Alongside chronic unexplainable neck and back pains that they're blaming on 'back spasms, ' cause it's not linked to arthritis and nobody will refer me to a rheumatologist.

*This...Makes sense.*

[sage.citrus]

This was such a fun video haha! Your original video going through the 2017 criteria is what made me realise I had EDS and not just somatic pain. That video honestly changed my life. I love all your videos, thank you so much for all you do! ♥️

[maddiealliemommy]

Good lord I have all of this, along with horrible stomach issues.

[lfrancis]

Such a good video. Honestly I think medical students should watch it, could really help with their studies

[LA-movi]

Just want to say Izzy your channel and videos like these has literally helped me so much in these past few months today I literally got diagnosed with joint hypermobility syndrome today after literally years of wrong diagnoses and pain and I’m awaiting genetic testing too to confirm or rule out EDS because I kind of fit the criteria too so I can actually get the right treatment now, like I thought I was just going insane till I found your videos and found that literally was like this is me too, so thank you so much your awesome 👏🏻 😊

[prismaticerror]

THANK YOU SO MUCH FOR THE CAPTIONS!!!! it means a lot that you put so much effort in :)

[azielbean]

Welcome to aziel's bi-monthly freak out that they're faking their diagnosed eds and have been lying about it my whole life and what if I'm lying about everything (while having to lie down in bed because I was in too much pain...)