I have elastic skin i did not new till now😮

I saw rheumatologist and diagnosed with HSD my knees dislocate, feeling tired, joint pains, migraines, constipation, diarrhoea and stomach pains I'm in pain everyday my husband is my carer too.

I was diagnosed with an unclassified type of EDS, but report says it is most like Classical-Like EDS. I don’t see that type discussed a lot. Thank you for making these videos about rarer subtypes!

Do you, or anyone you know have kEDS? I want to hear about it!

Can't risk trying some of these - mostly ones requiring hip stability. But I can still do a lot of these considering I'm a sofa loafing 39 year old layabout. There is not a spot on my back I cannot reach as long as I'm not wearing restrictive clothes. I'm on my quest to get a diagnosis to finally put the pieces together. Waiting on a call from the Rheumetologist 🙏

I just got a tentative EDS diagnosis (that I kinda suspected) and a geneticist referral, and I'm doing a hypermobility-specific online PT program, so I'm on my way on the 7 steps 🫡

I've had several problems for over 35 years in ,suffer neck sin swallowing, joint pain, and lots of pain. No diagnosis here in Britain. God help me. And all of us.

I am trying to get the genetic testing. I meet most all of the criteria for this form.I have done my research and believe I have this. My niece is suspected of the vascular kind. I am 67. It is progressing.

You know it!

Brionna Falls

Sound music: Colombia🇨🇴

Hi! You probably dont remember, but I had spoken with you about treatment and I have since got my inviate genetic test and read through it (still waiting on the doctor to tell me what to do for another month or two). I came back with somwthing like "undefined genetic varient" or something but that ADAMTS gene popped up on the list of other things so I'm thinking I might have this (thank God it's not veds phew). Just wanted to update! (Still miserable and getting progressively worse but learning more about it)

Trace Viaduct

this party trick led to severe carpel tunnel. 20 year old me is upset at 8-14 year old me.

HSD develop cardiac problem yes or no all patient

HSD all patients develop pots

HSD is develop cardiovascular disease yes or no

118 Predovic Shores

hsd is serious disease It is very danger Yes or no

Hsd is very serious disease

Hypermobility develop osteoarthritis in future in all patient develop yes or no

What is serious HSD and HEDS what severe

Hlo mam me HSD patient Mam only my synptoms is feet and knee muscle pain 1 year starting Can other symptoms develop etc gi issues, mCAS yes or no Future develop symptoms

74682 Maud Island

Oh my gosh #12 all the way! People think I’m like at least 10-15 years younger than I actually am, and yet my body feels ancient. Super fun! One time I got carded (in my 30’s) and the lady just looked up at me shocked and said ‘no way?! That’s amazing!’ 😂

I’m an engineer with a preference for mechanical stuff. The job I have now is a desk job and I can’t stand it, especially with my AuHD. I just got diagnosed a few weeks back with hEDS and now have no clue what to do since I was planning to go into mechanics lol

Just a fun fact to share : this form of EDS was discovered first in animals, and 20 years after on humans. Cats, dogs, horses and cows can have dEDS. Often in cats it's easily recognisable with the additionnal skin on their bodies, that makes them have a "funny" face in comparison with other cats. I think they are absolutly adorable !

Yes, completely, beyond just research and statistics and increasing funding for help on condition, it can significantly help improve quality of life. Even if you don’t have severe symptoms, after doctor #3 of EDS suspicion, I sought it out. Now I can confidently tell doctors I have it with it officially in my records, with a direct answer to “why do you think so?” It’s no longer challenging me if they don’t think I have it, but a much more qualified doctor. Not only that, but my mom who was much older so no longer flexible, it began explaining so many of her own issues. The comorbidities matter, because you’re more likely to have complications or things a doctor may not immediately jump to. It helped explain why my mom had to go to a wound clinic to get a surgery infusion fixed, why her gut is so slow that led to so so many issues from gastroparesis, diverticulitis, hiatal hernia, etc, and why she had to get so many joint replacements. As her daughter, I get to see these and see the signs early and begin changing my life style to minimize the conditions- I already have a slow gut, so I’m going my best to manage it so that I don’t end up finding out about x issue it caused later down the line due to me ignoring it. Not only that, I can seek aid for getting physically in shape with significantly less risk of injury since I can get physical therapy to stabilize my joints and guidance on how to be active while minimizing the wear on my joints.

geneticists can't diagnose heds tho right?

I have that on my left hand

Thanks! I didn't know there was one for children!

I can bend my thumb to my wrist

Hlo mam hypermobility patient is suffer to osteoarthritis in later life All patient in osteoarthritis Yes or no

I know this is two years old, but this was super helpful! I see a new Primary September 19th for a hEDS evaluation, and then from there he may refer me to get a genetics test. Thankfully I live 4 hours from Sioux Falls so I wouldn’t have to do too much traveling if that’s the case!🙏🏻 Growing up I was considered double jointed and clumsy. I had one major hip dislocation in second grade, and a finger dislocation in middle school, but I’ve always had joint subluxations and joint injuries. I’ve been watching your videos and can do just about everything in your Shorts you post. The only thing I’m worried about is I haven’t had any organ prolapses(or at least that I know of.) or hernias so I’m afraid I’ll be dismissed. Sorry for the long winded comment, it’s just exciting in a way to finally be so close to getting answers to all of my issues I’ve been having. Thank you!

660 Brooklyn Loaf

I’m a 9 on the Beighton, I have all 3 of feature c, and the last section is all correct. But I only meet 4/5 features in a (no one in my family has been tested for eds). So I’m pretty sure I’m only going to get a HSD diagnosis.

No, I have never heard of this subtype before. But I can definitely 💯 guarantee that it is mayhem on their body and makes them feel miserable!

Thank u for sharing ❤

Do you or anyone you know have dermatosparaxis EDS?

mine is like almost all the way

I think me, my sister, and possibly my mother have ClEds. Thought we couldn’t have eds for a while cuz none of us seriously atrophic scar, my mom even keloids sometimes. None of us have diagnoses but I am actively seeking one atm due to rapidly deteriorating joint health. My dad has flat feet and hypermobility issues, but my mom has had it so rough. Both her ankles have been broken, her Achilles’ tendon tore tripping over a tent, first knee replacement in her 40s, second knee a few years later, surgeries for multiple soft tissue conditions in both hands, recently had spine surgery and on top of that she now has had a prolapse too, as well as hand foot malformations. Me and the sister got the hand and foot deformities too, I have hip FAI and tore both labrums in my hips at 19, shoulders starting to go too and I’ve had pre-arthritic knees since I was a teenager (didn’t know then, “growing pains”, sure) and nerve issues in my left trap. Also got gastrointestinal issues and all of us have really low muscle tone and pelvic floor weakness, although I’m the one with seriously concerning proprioception. Me and the mom have swallowing issues, although hers may have cleared up. I’m only a couple years from 30. Sisters in her early 20s and dealing with tendonitis now. This all goes back generations, gma on moms side has a lot of the same issues, and that gpa has some hypermobility too, I still doubt they have the full recessive combo though. Very few resources in MN it seems sadly.

Im having my assessment today 😮

This is the video I NEEDED! I keep gaslighting myself into thinking I’m not sick enough to have HEDS

In my school batch i was only this tumba thing can do in front of them 😜

Does anyone know if everyone with EDS has the soft stretchy skin? I the hyper mobile joints and as I age I am becoming pretty deformed from hyperextended knees hips and ankles. Since I have chronic pain I have been diagnosed with Fibromyalgia.

You immediately lost me at “fun” facts when you dove straight into the comorbidities- what fun? Where she at? NOT HERE, I have the trifecta and then some, and THEY CAN STAY AWAY

I have a question! Are hEDS and femoral anteversion related in any way?

So, my siblings and I are diagnosed Autosomal dominant classic like Ehlers-Danlos through genetics testing and personal and family history. We get the mutation from our mother. What that means for us is, we are symptomatic through only one parent. My child is diagnosed hEDS. My sister has both AD clEDS and type 7a both diagnosed through genetic testing. We make a joke that we get RARE slapped on our butts more often than anyone I know.

My sister has type 7a

Actually I can do that too !! But people freak out when i do it! Lol but I rarely saw people who can do that 😂