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Judt checking in to see how you are. TH-cam just suggested this video to me. Its been a while since you posted and i wondered how you are and whether you managed to get a formal diagnosis yet? Muvh love from the UK! Xxx💕💓💖

So many things I have and have never heard of as a test. I always hear the beighton

-You have a positive Beighton Score. -You met 6/12 of the checks needed for Criterion 2. -You also met the checks needed for Criterion 3, although it seems your skin is more fragile/classical EDSish. To me, it looks you have an overlap of hEDS and cEDS, which can happen.

Girl!!!! Can i just say intermittent fasting and keto, supplementing w vita c, copper, turmeric, glucosamine chondroitin, cod liver oil, and MCT oil changed my life. I thoroughly believe in weight lifting and compound movements. Also plastic surgery when i get the . money (mini facelift)

Aawww that was precious!!!

I'm confused, a geneticist can test for classical EDS. I met all the criteria for EDS and have been diagnosed by two rheumatologists and the genetics clinic. The criteria is there for a reason as that is the means to diagnose it.

I was diagnosed way back in the early 2000's. At that time I could do all the Beighton scale things. Now, in my early 70's, weight and arthritis has changed that some. I remember a doctor then saying that I could "look forward to arthritis" because it would firm up my joints. That's a big no. The joints are still loose, but now they hurt more. I was fortunate to participate in the NIH EDS study back in 2004 and 2006. We all had skin biopsies and thorough exams and evaluations. I believe we all contributed to the development of the criteria and genetic data that is used for the basis of EDS diagnosis today. Back then, it was like the wild, wild west, internet still rather new and not much info on EDS of any type. We did have an email group that I think gave me the most information when I was first diagnosed, along with the EDS Foundation magazine. We had an email group that I think gave me the most information when I was first diagnosed, along with the EDS Foundation magazine. I still dont have the answers but I congratulate you on your efforts to help others understand - whether newly diagnosed or a family member. Keep up the great work.

Your unusual signs are elbows and skin yes thin and stretchy but softness is normal many people have. Tongue is normal not hyper mobile at all I checked my tongue can bend twice as more and I’m normal lol my wrists can do these but is normal too. If you can connect arms behind back means your spine is good and of athletic build , no scoliosis as everyone supposed to be able do it ( not me ). Your nails and hair and skin are all thin because you don’t have enough of healthy fat and collagen. But again is normal as many people have thin. Next it all will be dry. Look Jameela Jamie has good hair and skin as she has fat and collagen more than enough like. Not thin layers of everything but thick. Some people have thin and some thick like not due to joints mobility at all but other genetics.

I can do almost all of those things 😳

Holy moly, I was just wonderjng about/talking to my boyfriend about my bumpy chins 🤣 They're dented and bumpy from all the running into tables/corners, at least I assumed that's why. Glad I'm not just crazy

Moore Nancy Rodriguez Barbara Martin Helen

I was diagnosed because i have a tumour in my hip that i was complaining about the pain. They didn't want to look into and sent me to get checked for EDS. I do have it but i also have a giant cell tumour that they ignored for 3 years and told me the pain was in my head. They looked at the signs and family history but didn't do genetic testing. Hearing about the signs you said, i have them all, apart from touching my nose with my tongue. I'm wondering if I've got classic instead of hypermobile that they diagnosed me with twice.

Check your house for mold. Continual exposure to mycotoxins could be the root cause of some of your symptoms.

I'm really starting to think this is my issue. I have every hypermobile thing except my right pinky.. which may have broken/dislocated in childhood and not cared for. I have often said i get 'corpse fingers' when i get too cold. Like all the blood drains out and my fingers are pale and skeletal. What sort of doctor do I need to see? I dont even have a PCP right now...

One EDS disanosis is all proof needed in my book :) You got worse symptoms and have been diagnosed twice as many time as me so you got EDS For sure. Since you got a wheelchair because of youre EDS Diagnosis then do you think I can get a wheelchair as well? My walking tolerance is decreasing so I will need a wheelchair in a few years since my legs aren't stable enough to carry my body that well anymore

Major surgeries where stitches don't hold.

came for the feet and stayed for the feet

You haven't done a video for awhile so I'm hoping you are doing well & know people send prayers for you. How is McNabb?

Can you explain the red dot on hand thing!!?? I also have had a red dot on hand since childhood

I'm in tears. I'm just starting my EDS journey and I cannot describe how validated I feel by you right now

@shelby do you still go through this account? You mentioned Telehealth so I'm wondering if you're in Ontario?

That freeze frame killed me. Scream crying in Heds

OMG, all my life I have thought something is really wrong and I have tried for decodes to get answers but they just kinda look at me like I am crazy - I was in the ER a week ago because I could move my back at all without white light pain... They finally did a CT scan and said that I have degenerative discs - basically arthritis. I'll take it as a starting point in the right direction I guess.

Thank you for this! I really enjoyed watching it and good inspiration for what I should have on hand as someone with eds mcas and pots

Hmm .. some of these things I would have gotten more points for in my younger days, but now the arthritis got in the way of some joint mobility. Which I think is my body's way of saying "Hey! Stop doing that stretchy thing!"

Do you use kineology tapes for support? I have found the tape to be more effective than most braces.

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Did you ever get your genetic results? I know they have found the genes for every type except hEDS.

What about W sitting on the floor ?

I realize this was 4 years ago, but it is worth a try. You mentioned the red dot that appeared. Curious to know the explanation. Similar symptoms that I noticed, and didn’t know the reason.

What about red dot on your hand?

Did they not run a genetic test for the other types of EDS???

Very good idea. I have a back purse but with all my medical supplies it’s entirely too heavy. Before my illness got very bad I was a life long tiny purse person. I don’t know why I didn’t have the idea for a separate back pack sooner!!! I think we get so overwhelmed with chronic illness sometimes it’s hard to think of the little things. Also nice to see u looking so happy and excited. We all need more happy and excited days.

I’ve just recently gotten my diagnosis of HEDS and waiting on my DNA swab to test for several things that go along with Eds. I’m concerned about the problems I’m experiencing with my veins. My geneticist said I was the first in her experience with longer arm and hand length versus height. I didn’t see you mention that. I don’t believe I have as stretchy skin as you but a little stretchy and loose jointed everywhere in my body.

Your eyebrows are lonely for each other. Go get those little weird sperms fixed. So distracting. What were you saying?

Why get diagnosed? One good reason is if you have EDS there are many medical procedures and meds you cannot have.

Wait....shinbones aren't supposed to be bumpy? I'm watching everything I can because doctors where I am apparently aren't very familiar with it my doctor says she's sure I have but there's no testing for it.

Six hours? I am shocked that any doctor would be willing to do that!

Thank you for sharing this info.

We could be related. Same.

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You are adorable! Would love to see & hear more content of chatting about your EDS difficulties, your victories & general living. My rhumatologest recently asked me if anyone has ever mentioned EDS to me. No one ever has & I'm 64 years young! Glad you're docs are seeing what's going on with you & actively investigating. Hope you're doing OK. You brightened my chronic illness day. You are precious❤💜💙🩵🩷🦓

Thank you 🙏 l hope you can get diagnosed soon so you can be treated properly! not go for years and years without getting a diagnosis then the time docs are diagnosing you think that all your symptoms are related to getting old ! ❤🙏🇺🇸🙏💕

I see a lot of people bringing their pets into stores that only allow service animals.

This is a great informative video that calmed me. Just wanted to say thank you. I thought EDS'ers looked special but you look completely normal so just that alone educated me and all the signs too, extremely good video.

Thats really frustrating 😢 Im working on getting an official diagnosis to figure out wth is wrong with me, naturopath says Heds, physio says he can't say 100% but definitely HSD at the least and every GP thinks i have anxiety 😒 having issues like this sucks because of the lack of information ❤

ADHD stimulation meds are an antagonist to EDS😮😊❤

I have all the same things. And got tested. Nothiing turned up on DNA. So I got the hypermobility EDS diagnose four years ago. I am now worse then four years back. So It is very serious. Stay strong :)

Omg 🤯I thought everyone was able to do all of those things! Until now 🥲 The only thing I’m not able to do is touching the floor without bending my knees… but I do have back issues