Ehlers Danlos Syndrome (hEDS) diagnostic criteria | old vs current

How is hypermobile EDS diagnosed? And how did it used to be diagnosed prior to 2017? In the 1997 Villefranche diagnostic criteria, there were only 6 types of EDS, and the hypermobile type was called Type III. Today, there are 13 classified types. The diagnostic criteria for hEDS is much more detailed...but which is better? Sources below.

SOURCES:

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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#ehlersdanlos #EDS #hEDS

[purplishtiger]

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.

[jo]

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.

[crimsonluma]

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

[am]

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?

[lightworthy]

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

[SmallandStrong]

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

[justinerodriguez-kirschner]

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!!!

[funkygirlkathryn]

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

[shannongreenwell]

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!

[Olga-rusi]

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 😁

[MillsSkits]

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.

[katwelch]

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.

[rebeccajenkins]

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.

[lilioliver]

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 😊

[loryb]

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.

[elizabethlapointe]

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.

[jadesimon]

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.

[sherryobar]

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!

[ashleym]

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

[QuantumSorceress]

I’m a medical researcher and I’ve reviewed some scholarly articles and they all pretty much say that the new criteria is too strict and is also extremely harmful because many patients are no longer receiving the proper diagnosis. The studies found that there’s no significant difference between those that would get diagnosed with the new and old crieria. Meaning, the 2017 is too strict and isn’t based on any substantial scientific findings. The criteria was changed because of politics and money, which makes me highly suspicious of the goals of EDS society. Especially since it appears most clinicians disagree with this criteria.