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

[@IzzyKDNA]

GUYS.....I MESSED UP. Renata doesn't pass the first criteria and we forgot to include the knee hyperextension 🤦‍♀️. I know the criteria pretty well, so I'm shocked I forgot these things while filming and editing. But TBH, when Renata and I are together, it feels like our intelligence levels plummet. If you want the full criteria without the mess-ups, here's the link: kzbin.info/www/bejne/i3OZoWhvfa6NZrc

[@IzzyKDNA]

@@LadyPashta yeah i know and now I feel really dumb for messing it up 😭😭😭

[@katkaplan3]

Izzy Kornblau I thought that last night- that U forgot the knee one lol!

[@mysticsnow5290]

I thought It was weird that the knee hyperextension wasn't there but that's a simple mistake and so is the last couple of questions on the 1 Criteria. Don't worry about it, you wers with a friend and I know I am much more distracted with friends.

[@IzzyKDNA]

@@mysticsnow5290 ❤️

[@allisond.46]

Would she have passed the knee hyperextension test? Would you?

[@ijustrealllylikecats]

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

[@MamaBearHomeschools]

I have EDS very severely. I have had two children and have battled weight as of lately. I don't have a single stretch mark. I don't think the stretch mark criteria is a good question. I think the better question is what does the skin feel like, because 99% of EDS patients will have extremely soft, velvety skin.

[@cinnabonbon]

@@MamaBearHomeschools If you you check the criteria there is 2 questions, 1 asking about stretch marks and another asking about soft skin

[@MamaBearHomeschools]

@@cinnabonbon Yes, I know.

[@ChemicalViruS004]

We have stretchy but fragile skin. It tears apart instead because our collagen is defective. I feel the frustration 😂 I got my 1st stretch marks when I was 14

[@LifeLoveBeauty32]

WHY IS THIS. I do know it took me a growth spurt to get them on my stomach only. I have them literally nowhere else lol no thighs no arms no boobs. Just stomach and back.

[@funerealephemera3559]

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...

[@DahliaVonHellion]

I have hEDS and yeah I don’t bother going to the ER with joint dislocations, I get side eyed by some doctors coz of that but I tell them if I went in for every dislocation I would live there and because my joints are so loose in the first place it’s really easy to put things back in place. Definitely see a doctor about those symptoms!

[@charlykatbat4468]

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.

[@randomname4726]

Does your skin absorb the ink over time? I have classical EDS but looks more like hypermobile, and ive had to get several tattoos redone as grey spots and patches appear in them.

[@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

[@alien_from_andromeda]

Bike How do you spell Wazowski my skin isn’t stretchy either!

[@ursulasolo8628]

Have u had severe hair loss issues pertaining to this illness?

[@BirdSeedForSpeed]

@@ursulasolo8628 no. I do have severe hair loss from an underactive thyroid tho

[@TOXIC-fo2bc]

Your skin being stretchy depends on your body fat you can be doing and still have a lot of body fat I workout so I know shit about this

[@LifeLoveBeauty32]

My pain is the worst. I don’t have the elbows either

[@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.

[@KarleneAlyssa]

The amount of x rays and different scans piled on my table for joint issues that are normal (besides my back I do have mild osteoarthritis in one joint) so I guess I failed the last test and over passed the first too. I don't know the symptoms of this syndrome but excuse me while I go freak out searching on Google.

[@KarleneAlyssa]

Okay I just read a few symptoms apparently early onset osteoarthritis IS symptom so I've passed everything. WTF

[@TrashyQuery]

Yes I have recurrent atraumatic dislocations of shoulders/collarbone/hip. You need to find an EDS experienced doctor, a rheumatologist(or certain immunologists), eds experienced physiotherapist. Estrogen and fluctuating laxin hormone levels account to hypermobilty too, so much so that low dose testosterone is now a treatment. recommend Google or inspire forum and ask for a local eds specialist as non eds experienced people can even do harmful things like traction on an ehlers danlos person is asking for an injury.

[@labiandmabimabi5550]

@@KarleneAlyssa how are you now were you diagnosed are are you fine now

[@KarleneAlyssa]

@@labiandmabimabi5550 I've not seen a doctor about it actually but thank you for asking.

[@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!

[@crispyyrosee]

Do you show any signs or symptoms as well? Since it's a genetic condition, your daughter had to have inherited it from either you or her father. It took 26 years before doctors really found mine; so it's not uncommon to go undiagnosed for a long time

[@carmella88]

Does your daughter have it ? I'm concerned for my 17 year old too

[@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.

[@IKnowGirlStuff]

Jordan Leigh Wheatley I think she said “I definitely have that” when asked about chronic pain, around 10:20!

[@jordanleighwheatley]

@@IKnowGirlStuff no, she said she didn't when Izzy further clarified. She said she had an injury causing chronic pain.

[@babyfirefly1843]

Same

[@Andresfin]

Right that's crazy to me!!!!!!

[@maggiej.8425]

My friend told me he understood what it was like to have my widespread chronic pain because his knee was hurting 🤦‍♀️

[@puggirl415]

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.

[@adamslaura1]

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.

[@pabz_x]

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

[@nickicouture7297]

Abby P same

[@身赤-w3w]

Bruh I just looked and I have in one foot.

[@hollybeardsley3746]

SAME, I literally gasped.

[@no_peace]

I have them in my wrists too

[@brandon3872]

As someone with EDS, one of the most fruatrating symptoms for me is fatigue. Because our joints aren't held in place properly, every movement takes a lot of effort, and just doing normal every day tasks like brushing our hair, or opening a door can be tiring. It can take days to recover from a more active day. Sometimes people think I'm being lazy by not putting much effort into things, but each thing we do makes us more tired, so sometimes we need to conserve our energy.

[@tobedermatologists3216]

I am NHS doctor and trust me first time i have learnt EDS criteria clearly , thank you and bless you and always stay friends ameen

[@prismaticerror6911]

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

[@abandonedchanneld8031]

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.*

[@thismessismine]

You should deffffinitely be evaluated for EDS. Sometimes it's a long journey. If one doctor isn't working for you, try another. It's actually really important that people with EDS don't stretch too much, so usually physical therapy is modified accordingly and has very specific goals if you have EDS (mostly muscle strengthening without hyperextending the joints). A LOT of other physical therapy focuses on "improving range of motion," but people with EDS need the opposite--maxing out range of motion damages our faulty ligaments and causes pain.

[@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!!!

[@memebank9724]

I wish you luck. Also some people may say its in your head but its not. I dislocate something at least 10 times a day and the meds dont work but if you get diagnosed I wish you luck!

[@thismessismine]

Hey, if your wife has has a lot of broken bones, she might consider being evaluated for osteogenesis imperfecta. Not a majority, but a significant portion of people with EDS have this condition and it causes bones to break easily. People with many bone breaks and EDS are highly suspect for OI.

[@alexismarroquin9137]

What kind of eds does she have

[@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

[@christmastree7394]

same here!!! getting a diagnosis should not be this hard

[@JessandIzzGusington]

Same!

[@JessandIzzGusington]

@@nyxrhapsodos7251 i went to a Rheumatologist

[@ConnyNordlicht]

Same with me!

[@sunflowercatie]

My rheumatologist did the criteria with me (I passed and was told I have hEDS) but because I can’t afford genetic testing and insurance doesn’t pay for it she refuses to put it on my chart. It’s the most frustrating thing

[@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! ♥️

[@deborahfazio]

I’m so happy that you are here. I am considering an EDS channel. We have lost some awesome people. Those remaining are quite sick, and we used to sign on, and see Jaque. I loved them. I wandered in circles. Silent, sick, scared. They were my rock in dark days. I cried when I saw that your doing a channel. Thank you! We needed you.

[@BuzzingBee123]

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!💗

[@nicoles.5597]

This is a bit late but I was just reading about this today and just thought i'd drop a link for your friend - a novel form of EDS they are looking into, that may include elements of fibroids.

[@BuzzingBee123]

@@nicoles.5597 Thank you so much! That is fascinating and worth passing on for sure!!👍❤

[@nicoles.5597]

​@@BuzzingBee123 Of course! I hope all is well!

[@renbaker5124]

Maybe she has a different type of EDS? Hope you and your friend are doing well ❤️

[@BuzzingBee123]

@@renbaker5124 thank you! That's very sweet of you to say. We are both doing well! ❤

[@livipup]

Glad you made this video. The criteria for a lot of stuff isn't expressed in ways that make sense to people. Or at least not to me. I didn't think I had this, but I have hypermobility is some of my joints and was looking into something listed as a common comorbidity, so it was nice to see it all explained anyway.

[@memebank9724]

Im getting tested for hEDS in March wish me luck! I fit most criteria and have other things related to the condition and ive spent 6 years trying to get doctors to test me but I finally got through to them after mentioning one of my cousins has it

[@LA-mo3vi]

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 👏🏻 😊

[@livetrueenlighten55]

Just so you are aware. I was diagnosed hEDS by a geneticist and they said there is no genetic test for hEDS. There are tests for some of the other types. But I believe the score test is the only way to diagnose hEDS currently. Good luck and best wishes!

[@Alex-fm5mo]

I've been waiting YEARS and the end of this year or next year I think I'm going to finally get genetic testing. Doctors have been asking me since I was 7 if I've been diagnosed with EDS and when I say "no, should I be?" they go so awkwardly quiet and avoid the question. I passed all the tests except like 2 and we just have to wait to see which type it is cause I'm currently only diagnosed with Hypermobility disorder and connective tissue problems. Its just so frustrating. I finally got diagnosed with POTS around 2 or 3 years ago so that's good!

[@aqualungs77]

Thanks for the videos! Last august a rheumatologist said I was very hypermobile and that was the end of her expertise, other than keeping joints wrapped tight and proper exerise to strengthen joints. I looked up Hypermobility and some vids and was taken aback. I also have degenerative disc disease and a fused back. On Tuesday I saw another specialist and was diagnosed with Ehlers Danlos Hypermobility. It is so bittersweet.. Having issues since a kid, back issues at 20, and 42 now, and everything just makes sense. I’m also male, so I think it’s more rare in males?? Anyways thanks for the support.

[@cherylcrawford4841]

I was looking it up for my son who is 12 but I am 43 and this explains so many of my problems growing up and some now that doctors have been treating as separate things. Then it explains some things about my daughter who is 23. I am floored.

[@lfrancis8980]

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

[@coolkitty154]

Currently a medical student and watching this :)

[@malinichandra6953]

Yes most doctors don’t know much abt EDS

[@Space_Princess]

I have hEDS. I have so much wrong with me that comes with the condition and an autoimmune disorder (underactive thyroid) and I also had an ultra sound on my heart which showed a very mild weak heart valve but it's Apparently normal for the average person in the population so it's nothing to worry about. I just hope it doesn't develop into something serious in the future. Especially since I have POTS and suffer from anxiety about health. It's my worst nightmare to develop a weak heart valve. I'd much rather die from something else than that

[@katkaplan3]

Omg I remember doing this myself before seeing the genetic dr, and being freaked out by how many I passed, like almost all in every criteria, and then the dr finding even more. I hated those papukes and striae/stretch marks as a kid.

[@catmomlavender3036]

Yes me too. Have you noticed the palpules combine into one bigger one ? Because mine did I had so many that they made a big one. But I read that happens sometimes. When I first found mine I thought about popping it sho I sat down and pulled n.y foot up and was like ... it's gone lol

[@Jabez0]

@@catmomlavender3036 yes, I even have them on my wrists and I have one big one that bulges out even when I dont put pressure on my hands.

[@sarahh4927]

This is a great video! It can be so hard for us EDSers to judge for ourselves how we match up to certain criteria when we don’t have a point of comparison. Like I remember that I was really unsure about whether my palate was high and narrow. But when I met with my geneticist for the first time, he took one look in my mouth and said “oh wow! Yeah that definitely meets the criteria.” Also, other than the dental crowding, my minor criteria were exactly the same as yours! Including meeting the steinberg sign but not meeting the walker-Murdoch sign. Cool to see that there are others whose particular EDS phenotype is so similar to mine!

[@bitter2sweet]

Hiya, I'm actually getting tested in a couple months. Been in pt forever for joint pain, unfortunately I have developed osteoarthritis. I am stiff and flexible at the same time. Almost my entire body is hypermobile including toes. I get spasms all over my body which is unbearble at times. I definitely pass the test. Last year my migraines and joint pain flared up so bad. Found out I'm allergic to wheat, oats, nuts, citrus, dairy, milk, tomatoes, mold, cats, dogs, soy. Some of those causes anaphylactic shock and sometimes I have a 12 hr delay. Painful life since I was a toddler. I was sprain queen going up.

[@PARoth2011]

Hope you are looking into Mast Cell Activation Syndrome which often linked with eds

[@bitter2sweet]

@@PARoth2011 They suspect I have Mast cell since I'm allergic to many things. I mainly eat the same things over and over again. I try something new, I have a life-threatening reaction.

[@PARoth2011]

@@bitter2sweet I have had MCAS for 12 years with anaphylaxis. I suspected that a 22 yr old girl who works for me has Eds so I researched it further to show her and that’s when it started clicking that I have so many of the same hyper mobility criteria that I will have to find out if I have EDS.

[@bitter2sweet]

@Patrice A Roth with regular massage therapy, pt, and diet it isn't all that bad. Massage therapy changed my life. Also supplements as I don't absorb nutrients properly. I'm on no meds except for occasional benadryl. Very manageable with bracing as needed. Having a great med team makes the world difference with treatment

[@olliecunningham1298]

I've been dealing w/ chronic pain and hypermobility since I was really young and after years of searching for answers I have FINALLY figured out that I probably have either hEDS or an HSD (since a few symptoms are so subjective it's hard to tell if I match all the criteria). Been going through your channel and honestly this video has been THE MOST helpful for providing a reference point to a "normal" person's body, to prove to myself that I'm not just exaggerating my issues. Just thought I'd drop by to say thanks and that you're doing such important work with this channel!!!!

[@maddiealliemommy]

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

[@nomadicnative2444]

Me too!! Some more symptoms I have are..chronic headaches and my eyes are terribly light sensitive..not to mention the dry eyes. I do have a problem with my palate. When I was a kid I was told by an orthodontist that I had to many teeth for my small jaw.. taking dental xrays are a nightmare. Even the baby films are to big and cut up my gums. My mouth guard is the "child" size.. my skin bruises easy but the only thing that tears it is that hosp tape and was told that was common.. can't take alot of different pain meds or antibiotics..either I'm immune to some or allergic to others...

[@MamaBearHomeschools]

EDS patients have lots of digestive issues including IBS. Typically every EDS patient has IBS, but most have other digestive issues like hiatal hernias, There is another one that has to do with bacteria overgrowth in your intestine that I forget the name, ulcerative colitis, all kinds of digestive issues.

[@no_peace]

@@MamaBearHomeschools SIBO?

[@MamaBearHomeschools]

@@no_peace Yes!

[@RealZayComo]

@@MamaBearHomeschools hi I was diagnosed with sibo which I read is a symptom of Eds, I have a few of the Eds symptoms that I’ve researched but is there anything particular that you take that helps with your ibs or digestive issues ? 🙏

[@jillanderson2596]

I was diagnosed at 51, when I went to a rheumatologist to get a confirmation of Sjogrens. He just watched me talk with my hands, asked a few questions and we found out my "hip dysplasia" at birth and "dislocating knees", "joints that are not formed right" (including loosey goosey joints LOL I can do yoga quite well!!)......and got excited and informed me and said I have Ehrlos Danlos!!! Um, ok, what is it? LOL!!!! We never knew why my knees constantly dislocated from age 7 until it was "fixed" via surgery at 12 (left) & 13 (right) that isn't done anymore because it doesn't work-yes it stopped the dislocations BUT has caused so many other issues, Keep smiling!!! 😊

[@anneseblockley5276]

Thank you for this!! I’ve had 4 surgeries for hip dysplasia and a lot of my friends with the same condition recommended I look into hEDS because of my chronic pain and reoccurring issues. After seeing this I definitely feel like it’s time to go to the doctor! 🤦🏻‍♀️

[@lilliansnyder9113]

I passed all the criteria until (possibly) the last one. I might have RA. I have a lot of problems with my joints and I’m doing research. Obviously I’m not going to self diagnose, but it’s good to know things when getting checked

[@IcebulletZ]

9/9, I can contort and did so as a child. Fairly frequent dislocations/subluxation of the wrists, knee and ankles absent of trauma. Velvet skin but not stretchy. Crowded teeth as a kid but fixed with a retainer. I can't do the thumb things because my thumb is stupid short. Dad is extremely hypermobile. So I pass a good handful of the criteria. I have pectus Excavatum as well.

[@naseerahvj]

If you have stretch marks and you've not been obease or had kids that's positive, easpecially if you got at puberty. I've had kids and been overweight, but got mine at about 11 years old

[@TheLordSheogorath]

Omg this, I remember feeling so ashamed since I started having them at 10!

[@nyxrhapsodos7251]

What kind of dr do you need to see to get tested/checked for this? My General/Family Dr is not knowledgeable enough and has never heard of 2 of my illness and they are more common than EDS.

[@thismessismine]

It varies a lot. Technically any doctor can diagnose hypermobile EDS using these criteria. A rheumatologist, geneticist, or your primary care physician are the most common--but in many cases, these types of doctors might refuse to diagnose patients with EDS completely (for a few reasons). My suggestion is to start with a rheumatologist and ask when you first call if they treat patients with Ehlers Danlos Syndrome. Also, as a general tip especially if you have multiple health conditions, don't be afraid to change doctors when one doctor isn't cutting it!.If they're dismissive, unhelpful, and/or give you a general unsatisfied feeling... find a new one. A doctor you love who listens makes ALL the difference. Really, regardless of the type of doctor, the one who's willing to listen to you is who you need, so it requires a little bit of searching sometimes. Good luck!

[@TatePhillips]

I think you may have just helped me discover what has been causing my chronic pain and a ton of other symptoms for the last several years. Touching base with my doctor about it to see if they can test me for EDS and I can start trying to manage my symptoms better.

[@lentheschutten7949]

Do you also have other conditions like POTS, Dysautonomia, gastroparesis or something? I feel like a lot of times hEDS doesn't come alone..

[@MamaBearHomeschools]

Yes, EDS patients have all three of those plus IBS. Then we also have many more things.

[@heatherprock8205]

Thanks for posting this. I just sent my info in yesterday to Baylor to get checked for EDS. My scores on this were much higher than I realized. Looking forward to learning more and being preventative!

[@jaydaholland5917]

I honestly hate having EDS it is so hard being my age and having friends that are so clueless when it comes to it. They don't seem to understand it and I feel so different compared to them. I still am very active but it's hard to explain to my friends that I can't go out the whole day because my hips will sub-lax and I can't walk or my shoulder or leg will be burning with pain and it becomes so unbearable. It's comforting to know others know what it feels like. When I was younger it was like a cool thing where I could do tricks and it wouldn't really get in the way, but now I'm a teen it's like really taking a toll on my day to day life. I can no longer walk normally a majority of the time (I walk with a limp) because my hips can't stay in place, same with my knees. I have constant pain and it keeps me from doing things as well as keeping me up at night, taking pain medication constantly too is really unhealthy. I also struggle with other medical conditions such as daily chronic headaches and migraines, with constant nausea, dizziness and feeling cold. Along with many other things. I honestly would love to have more people in my life that could just understand and relate to me and my pains with this condition it would make me feel so much less singled out. Sorry about my rant I just felt I could find some people that would understand here :) have a nice day xoxo

[@sayabetancourt981]

Jayda Holland Oh my gosh I experience almost the exact things as well but have not been diagnosed. Would you be willing to talk with me more about this?

[@raging_allday2479]

Hey man about you always feeling cold o think you might have rainooids sorry I don't know how to spell it but it's working about cell collapsing causing there to be no oxygen making them cold making your body colder

[@keynchris7059]

Super interesting to watch. I have rheumatoid arthritis, so I have more limited mobility. Loved watching seeing the difference between someone with and without eds.

[@shadowcat6567]

I went to school with a couple of people who could hyperextend their elbows almost to the point that they were bending their arms both way, touch their thumbs to their wrists, bend their pinkies so far back that they would lay against the back of their palms, and damn near twist themselves into pretzels! Everybody just thought they were double jointed or something but this makes me wonder!

[@rachelg9873]

My friend was a cheerleader in school and I'd go to practices to watch her coach yell, "LAUREN, fix your arms you're going to scare people!!!" Because her arms would hyper extend to a disturbing distance.

[@spearmintlatios9047]

I was one of those kids and figured out that I have an “unspecified” connective tissue disorder which means I don’t have enough body symptoms so classify as EDS

[@courtneycrowe7580]

Came here for comparison. I've suspected I have hEDS for awhile now. Compared to you both, I scored a perfect Beighton, with the knee test included, and I'm able to bend my first finger all the way back to my hand, it was my parlor trick as a child. My teeth are severely overcrowded and I have awful dental issues. Recently I have been looking for answers regarding my WHITE stretch marks, and digestive issues. My mom was also diagnosed with Rheumatoid Arthritis two weeks ago. Hopefully a doctor will test me for this!

[@kaleighbertrand1405]

I have been fighting since I was a teenager to get a solid diagnosis for myself. I recently saw a geneticist that only did not even half of these tests and said I'm just hypermobile. My cousin and I share many of the same comorbidities and she has an eds diagnosis. Something is telling me the geneticist is wrong and that I am EDS. I have problems with my knees, my wrists, my ankles, my feet, my hips, my neck and back, and my shoulders. I have pretty severe IBS-M. I have PoTS. I have cholinergic urticaria. I develop allergic reactions to things all the time. And as time goes on, more and more issues keep coming to the surface. It's so frustrating.

[@mkingamess7029]

you two are such a dynamic duo :,) this was a very helpful video, thank you!

[@audrieblack5654]

I was diagnosed about 2 years ago with hEDS. I have other chronic illnesses but eds is ties for the most i struggle with

[@FreggFaerie]

Other Chronic illnesses are extremely common in EDS patients dues to the fragility of our organs, the stress we are under, and the damage that does to our immune systems. I wish it was different, as if the EDS wasnt already enough, right???

[@Katskraftycrochetkorner]

I just learned that 2 years after your video, they have a genetic test for EDS now!!

[@Icetalon02]

This is actually helpful cause I have no idea what normal is when it comes to how much normal fingers (and other joints) can bend back. Mine can go flat on the back of my hand. Finger splints are definitely something I need. I have all 9 points. I am extremely hypermobile

[@crash0602]

My primary physician refuses to diagnose me even though I pass the criteria and my other doctors and parents agree this was the same thing that happened with my POTS nobody who doesn’t live everyday in pain doesn’t understand what it’s like to live like that

[@idunno966]

I can "dislocate" my shoulder to do things like clasp my hands behind my back and then lift them over my head to bring them to the front Oh and my ankles like to sprain themselves all the time when I'm just walking along on flat land

[@lizmerrick6883]

Thank you so much! I've been wondering if i'm hypermobile and seen the test but I have nothing to compare it to! This is so helpful.

[@mariethedicedragon5977]

I appreciate this a lot. It's hard to know what is normal vs abnormal for some things like skin streatch and stuff like that

[@lillyrose3545]

It’s weird seeing someone not hypermobile as myself, my husband and my daughters are all hypermobile.

[@lovethelifeyoulive2023]

Understanding is the key to living a life you love.

[@Jerdeth1]

Thank you for this....I was a full scholarship musician and blessed with being lean and muscular, and cursed with this lol. Having quality docs diagnose it, instead of just being likd,but you look good, and are strong even with full thickness rotator cuff tears , so you should be fine after surgeries .....meanwhile I went from being a sprint runner to needing a cane sometimes as my feet are failing and also a new weird one, is having swollen legs, from venous stasis. Def be mindful, I thought I was gonna go back to maybe hitting some bodybuilding goals, and now I have like Perma PT, and have to relearn everything and be mindful of music even, no jogging right now, used to rock climb and rappel down....at least I don't have the fatal part.

[@azielbean787]

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...)

[@livetrueenlighten55]

Sounds rough. You will know if you are faking. Faking requires planning. Somone could be confused, but thats not faking. I hope you can listen to your body and find the help it needs. Very best wishes.

[@parlourghosts5433]

I can bend all my fingers back to touch the back of my hand, my thumb can touch my wrist, i can do the splits, I can place my palms flat against the ground with my legs straight, and my knees hyperextend. 😅😅

[@kristelfae5054]

Thanks Izzy, another great video, love seeing your friendship on videos too x

[@maggiegrace5934]

I have eds and it’s a horrible and painful disease.

[@desireegallagher5490]

It’s so hard and as I’ve gotten older and injured myself sitting sucks. Or days where you can’t breathe because of pain. I wish yall the best.

[@missoffischl]

thank you so much for the visual comparison!! I'm someone who's on the autism spectrum and has adhd with really sensitive skin from allergens. I thought my joints being the way they are were normal, so my research began a few years ago. my joints can do everything demonstrated here and I was born with dislocated peroneal tendons that have gradually caused more pain as of recently. I'm also seeking a POTS diagnosis, but it's so hard when nobody knows that EDS or POTS is, or they tend to put confidence that it's something else. It's one of the reasons why I havent been finding the *correct* treatment to manage it when my state has no EDS doctors and doctors think they know what theyre doing 😢 running from doctor to doctor is EXHAUSTING for this 😪🤣🙏

[@TeamRockHit4]

Part A: 7/9 (4/5 additional criteria) Part B: Criteria 1: 5/12 Criteria 2: no Criteria 3: 2/3 Part C: All no However my GP argues I can't be considered as I don't have a history of dislocations or a blood test indicating RA, which is required for a referral. In addition because I could do more as a child he argued it's a sign things are improving, despite severe joint pain and general tightening now. However he has agreed to a rheumatologist referral... reluctantly

[@TeamRockHit4]

Found a tape measure. Height 70", reach 77", score 1.1. That was the one I wasn't sure about with B1

[@alikix1146]

i accidentally stumbled upon eds criteria last night and im now realising i meet all the criteria... ive been described as double jointed/flexible my whole life, had constant leg pain when i was younger and now have back pain, have constant knee dislocations which are brought on by absolutely no trauma, a 7-8/9 beighton score, VERY stretchy and soft skin, papules on my heels, unprovoked "stretch marks" (armpits, arms, back, hips, chest, knees), long limbs + fingers, a fair range of stomach issues, and i am constantly dizzy, fainting, or on the verge of fainting - IF i do have eds (im not saying i do as i honestly don't know) im honestly scared what this means for my health in the future and what to do as im only 15

[@lizsun261]

i was given a 7 or 8/9 on the beighton and passed only 2 of the criteria so i was dxed with eds. the criteria isnt amazing imo, because i have lots of issues with my joints and collagen but i dont "technically" have eds 🤷‍♀️

[@penelopepolinsneemeyer4757]

Fascinating stuff, Izzy!

[@IzzyKDNA]

thanks!!

[@Laurenlucky12]

I found this video by accident but thank you SO much for sharing. I've joked about hypermobility and "long alien fingers and toes" since birth but never knew it had a name. It's so nice to just look down at my hands and go "Aha! Arachnodactyly!" Versus thinking about Jack Skellington from the Nightmare Before Christmas. haha.

[@kernelsmith]

I have hEDS and I've had 26 surgeries, all but 2 were orthopedic or neurosurgical in nature

[@spanque31]

I had 9 orthopedic surgeries starting from the age of 21 and it is more than enough for me. 26 is absolutely horrific. Stay strong! ❤‍🩹

[@skytower1662]

Uhh so when im having joint instability my muscles lock down and I become less flexible (or risk putting things out by attempting) But when im not having a joint flare, I do pass a lot of them Like last night my fiance had to put some of the joints in my wrist and hand back into place, and today I have limited motion thats worse than a regular person's range of motion. Would this keep me from getting diagnosed? I keep wondering if im just imagining/being dramatic with the subluxations/dislocations, but then the people around me are like "wtf your joint shouldn't look like that, and it's sooooo stiff, it's like it's popped out" and when I have my fiance help me, I can feel really big joint shifts far beyond cracking a joint could ever get. Sometimes when I get flare ups I can't hold things because my finger joints are too unstable :( But right now I'm super stiff, like it's hard to move at all, and it makes me scared that I'm just exaggerating because right now I couldn't pass the tests (when last week I could).

[@frankiesjusttarot9851]

kzbin.info/door/1PVLGWeT3a6Cto-kOD9IfQ I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on KZbin channel. No more chemo. am completely free. Thanks Doc

[@naseerahvj]

My physical therapist measured my joints, I technically missed one one elbow by one degree, but my geneticist still marked it as positive.

[@Dulcimerist]

Thanks for another great video! (I also have hEDS, but it took a couple of decades for doctors to figure out that I have it.) Quick question - Did they ever make you play Red Rover in school or at camp as a kid? Growing up, I always wondered why adults would make kids play a brutally painful game! I'd always end up a bit bruised, and my shoulders/arms/wrists would always feel horrible afterwards. Just another one of those early warning anecdotes that pointed to EDS.

[@leeyost9917]

Is it harmful to go undiagnosed? What benefits have you seen due to diagnosis?

[@juhaa4180]

I got diagnosed with hsd, 1 of the 12 criteria away from EDS (my doctor wrote 4 of them : velvety skin, extensibility, papules and arachnodactylia) but he did mention my narrow palate (I had palate expanders growing up), without writing it on the report, therefore classing my case as hsd. do you know if it could have been a mistake or is there an explanation ? It wouldn't change much things but I kinda feel like a fraud when I say I have eds and I'm afraid I might not have a good covering of my future medical fees (I live in Europe)

[@maplebacon1]

Hi there, for the dental symptom, you have to have a high or narrow palate AND dental crowding. I'm not sure what the case for you is, but that may be why your doctor didn't count it as a symptom.

[@juhaa4180]

@@maplebacon1 actually I did have both narrow palate and dental crowding (I've had braces a lot and my teeth that grew after it look sideways haha)

[@AuthenticMage]

For me my thumbs dislocate, my knees hyperextend, and if I move wrong my shoulders do something, but I’m still not sure if they dislocate or hyperextend. I’m not sure on any of the other criteria though. Thumbs go out 3-5 times weekly, knees hyperextend 5-6 times daily, and shoulders go about 1-3 times monthly.

[@danielaaguilar6330]

Same bruh

[@victoriagubrud2373]

I can hyperextended my shoulders. I thought it was dislocation literally up until I read your post then I had the aha moment where I was like if it was dislocation it should hurt and I shouldn't be able to force it or make it happen. So if it hurts when you do it and you have to put it back in place with your other hand then it's dislocate but if it doesn't hurt and you can't willingly don't most likely hyperextended

[@mphorsemanship4737]

Ahhhhh I’ve been waiting for one of these!!!! Can’t wait to watch🥰

[@mysticsnow5290]

I'm pretty sure I pass the Criteria, I have 5/9(I could have more) I think I might have 5/12 and have 3/3 then the last oneI have slightly fragile skin(I have skin allergies and can shred my skin really quickly and pretty easily). The doctors have diagnosed me with Chronic wide-spread pain and have told me I'm Hypermobile but I reallu don't know about the diagnosis they gave me since I had these pains and instability my whole life(pain and instability have gotten worse as I've gotten older). I asked my first pediatrician to test me for it but he put me down as a 1 when I could easliy put my thumb to my wrist and bend my pinkies(and the rest of my fingers) to 90° or over.

[@kristelfae5054]

I feel like the beighton score isn't really enough...even if it is helpful it seems to be really subjective Dr to Dr, some are thinking only if you can do the extreme levels....sigh...also had this problem, though was at least diagnosed with HSD. Plans for a second opinion from another geneticist next year too.

[@mysticsnow5290]

@@kristelfae5054 Sorry to hear you had problems too but I'm glad to hear that they have diagnosed you now. I had a couple doctors ask if we had looked into EDS with I knew about way before I got worse. I recently when to Brisbane to see the doctors there and had mentioned EDS but they didn't look into it at all, it's like no one is even going to look into it and it's so frustrating since it doesn't take long to do the Criteria.

[@kristelfae5054]

@@mysticsnow5290 oh helloooo another Aussie! Yeah I think it's even bit more behind with knowledge here in Aus... Are you in any of the EDS groups on fb? There's a couple of Aussie ones I've found super helpful with Dr recs. I think my diagnosis was affected by weight bias/stigma, my stretch marks have nothing to do with my fat... But Dr's automatically assume they do... Think that affected Brighton score too...

[@mysticsnow5290]

@@kristelfae5054 I hardly ever see other Aussies on here! I don't have any social media since I don't like it but I can look into it. And I'm sorry they assumed that your stretch marks were from fat, I git a virus that had some acheing joints and a bit a muscle pain so now everyone is treating that as the cause if all my problems even though I had the same pains before I got sick but they aren't taking that into account so I'm really unsure on their diagnosis.

[@kristelfae5054]

@@mysticsnow5290 yeah I know what you mean... Fobbing you off grrr, I'll grab the name of the group for you 😊

[@MamaBearHomeschools]

Hi fellow Zebra sister! Great video! Love to see members of the Dazzle sharing their stories. I found it so interesting to listen to what another zebra sister qualifies with.things that you would say no to I had or things that you would say yes to I didn't have, and then of course we had lots of things that were the same. Our disease is the same, but we all suffer so differently and to different degrees of pain and trouble. Anyway, great educational video and Love to see the awareness happening! God bless you! 💋♥️🦓

[@IzzyKDNA]

[@oldtimeyasswhooper1014]

They have removed touching the ground...

[@kittygamer-7579]

yeah cause almost everyone can do that

[@sharonniessen]

Great video! Where can I find all criteria you’re using?

[@kennastanfill4667]

Thanks. You explained it so well. I was diagnosed in 2017. Passed all criteria. 8/9 Bscore 7/12 criteria 2 and my mother has MS but she meets all criteria of hEDS. My 3 children are effected mildly but nothing like me.

[@kennastanfill4667]

And my elbows are extreme. Some medical professionals say mine are the most severe they have ever seen

[@Loupieloulou]

I was recently diagnosed… it’s so weird how the stuff I thought was normal and that everyone experienced… isn’t.

[@yunjin_is_life6143]

I got 8/9 for the beighton test when I got diagnosed, but they said I would've gotten 9/9 if my hamstrings weren't so tight (I can't touch the floor)

[@kar460]

I have papules on both of my ankles. But i dont have to move my feet back and fourth. They also dont look like those

[@MilnaAlen]

Yeah I would probably be "benign hypermobility". I'm 5 out of 9 and I have joint pain and my knee dislocated in a pharmacy getting up from a chair. But I don't really have stretchy skin. I do have narrow palate and myopia. But really my subluxations are much rarer than most EDS sufferers. I just fall somewhere in between.

[@SobrietyandSolace]

Pain doesn’t sound benign though

[@paoloitalia4863]

Hi Izzy, I just follow you. I am a 45 year old boy and most likely have Elhers Danlos syndrome (I am awaiting a diagnosis by an excellent Italian geneticist specialized in EDS, who, for some years, has also worked in the States). I want to ask you a question. Among the symptoms you described in your various videos, I noticed that you never mentioned dysfunction of the Temporomandibular Joints (ATm, in Italian), Tmj, in English, right? Here is the question: have you ever had jaw problems? That is to the masseter muscles, condyles, clicks, crunches and various noises? Maybe you have talked about it and it will have escaped me. Forgive my little fluent English, I hope you understand my question. Waiting for your kind reply, I wish you a peaceful day. Greetings from Italy (from the splendid south of the Puglia region).

[@traceykerr572]

I did not get diagnosed with EDS until 40. What is a coincidental finding, and only now 15 years later am I getting extremely flexible fingers and wrists. And it’s HEDS.Mine got worse over the years. So it doesn’t rule out your sister

[@kayleighkeller4347]

great video! i always forget being able to do these contortions and having so many symptoms aren’t...the average? so interesting. thanks for sharing izzy!!!

[@kitten1207]

I was just diagnosed a few days ago and I got 9/9 on the Beighton scale, I don't know too much about this condition so I'm just binge watching some videos now!

[@melodymorningdew]

Thanks so much for the info- I'm struggling rn to find a diagnosis for all of the pain and dizziness that I deal with but I'm hoping I find answers soon and based on the criteria I could test out of these I might have EDS but still unsure.

[@smievil]

my mom got atrophic scarrings after scalding her arm with boiling water as a toddler, apparently one nurse asked her if she had made holes or put syringes in her arm

[@graceskelton3268]

I have Eds but the biggest part is my gut not working, despite all the dislocations and POTs

[@PositiveDeviantPerson]

I have hEDS passed 7/9 no stretch marks even after 3 large kids and no hyper extend of the elbows or knees...my sister on the other hand I’m pretty sure can check off every single symptom

[@BlueBirdsSong]

I’m sorry Kristel Fae I hit reply and it sent me here. That last comment I made was directed to you about pain and things to do. Thank you for caring.🦋💕

[@b.rdeatr]

God, we fought with the doctors for years and years about what was wrong with me (I was about 2 when we realized something was wrong). They kept saying it was growing pains, but then I took water therapy, and the first person who said I had ehlers-danlos was my water therapist. After this, everyone else that I went to kept saying she has ehlers-danlos. We finally got my diagnosis in 2018-2019 at U of M children's hospital (I was about 9-10 there, I'm 12 now though). Did you have to fight with doctors for over 6 years before getting a diagnosis? I found it very stupid.

[@Staceyintampa]

Very common! It seems like not many physicians understand it. My daughter is 30 and just getting diagnosed. Don't give up! YOU know YOU so disregard the ones that won't listen and find someone that will!

[@b.rdeatr]

@@Staceyintampa Thank you so much for the encouragement! It took us so long to figure out what was wrong with me 😅

[@robetheridge6999]

I passed the 1st with 7, the 2nd with 8, no family history, yes on the pain section, and did not have any of the last 3. Both of my valves are prolapsed...it's painful, but at least I know it's not a heart attack.

[@jessbatchelor685]

My doctors refuse to even see me for the possibility of EDS because they think I’m “having a laugh” despite the fact that I live in pain every day with my joints and wake up to constant dislocations that happen just from turning around. And I get the other not so pleasant symptoms 😑 annoying but I’ll live I guess 🤔

[@amysunshine1305]

Jess Batchelor YOU NEED TO PUSH AT THEM! I got told for years that I was making shit up, and I now I have two very expensive doctors that’s I had to pay to see who know all to well I wasn’t making it up.

[@gidgetgetscrafty]

Will your insurance allow you to see another doctor?

[@jessbatchelor685]

gidgetgoesplanning I don’t have insurance... I’m in the uk, which is why doctors don’t take people as seriously because they’ll make stuff up for drugs and unnecessary attention 😑

[@angelaflying9591]

I have stretchy skin and hyper mobility in some joints but I don't even know what dislocation feels like , I never had it. I had diastema , small teeth, overbite, and a wonderful combination of kyphosis, scoliosis, lordosis . Breathing issues related to swollen turbinates. Gastrointestinal issues (aka sensible gut) . I often have joints pains. My skin is very thick in some parts but very thin and translucent in others . I have an overproduction of collagens in wound healing. Skin that gets red with mild pression. Idk what I have.

[@shaunpichu7220]

Could Reneta tell us what palate expander she used? I have a very narrow and high palate and would like to change thar. Also I literally just learned about eds today and I pass a lot of the criterias. I think I need to see a doctor. I have severe chronic fatigue and it really affects my life.

[@juniper617]

A first degree relative is your parent, child, or sibling.

[@victorfergn]

Does my stepsister count? (just kidding)