Signs You Might Have Ehlers-Danlos Syndrome
Signs You Might Have Ehlers-Danlos Syndrome

The Mighty community shares signs they noticed that ultimately ended up to be due to Ehlers-Danlos syndrome.

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27 thoughts on “Signs You Might Have Ehlers-Danlos Syndrome”
  1. Thanks for this video and the awareness, my mother has this, her doctor in chronic fatigue told her that it's an advantage to be so flexible, but my mum is always ill, she's has also a cardiopathie and many other commorbidities, I have many symptoms that you mentioned in your video but not so strong as my mother has, I had a skin biopsy and the doctors told me that they didn't find anything significant to have a diagnose, is a very misunderstood condition and you could be really sick, I use to take many collagen, magnesium, vitamins, q10, etc, just to improve my collagen but there is no cure yet. Sorry for my English

  2. I have flexible fingers, i can touch my nose by my tongue, my palm is most of the time burning and my hand gets very tired when i am not. can u tell me what i have?

  3. Is my knee popping in and out of place (and me having to put it back in) a early sign? I had most of those and I’ve always been really flexible and I can pop my shoulder out of place back and forth which apparently most people cannot do.

  4. I don't have EDS, but every thing a EDS suffer has I have, mines like mixing 3 different types of EDS into one human. I have a rare genetic deletion syndrome in
    4q.30… My Hart goes out to any one whom thinks they have it, or has EDS, or any of these conditions that have the same side effects. My hart gose out to you all blessings.

  5. I'm 43 and got my EDS type 3 diagnosis last year. As a child I would always 'W" sit, had been able to consciously dislocate my knees (no pain) since I was 6, was diagnosed with scoliosis at 9 but was told my joints were "too loose" for a brace, and was able to contort into some pretty odd positions until about 5 years ago. I slipped my back out the first time at 14. Now my knees try to bend backwards when I walk, and they always hurt. My hips try to dislocate frequently, as do my shoulders. I can't chew gum without dislocating my jaw. To those of you still able to do the "party tricks" without pain, remember that it does catch up to you. And to anyone out there watching this wondering what EDS is, if any of what is described in the video or in the comments sounds familiar, whether it be yourself or someone you know, get screened. While there is no cure, there are ways to prevent serious injuries.

  6. Until I saw something about ED on The Mighty, I only thought that touching your nose with your tongue was just a funny thing some people (like me) could do, just like "touching your toes" and putting your hands flat on the floor. I can still sit W, too, (it's getting up that's hard), and I HURT all the time. I can't do any of the more extreme stuff, though, like pulling my thumb back to my arm. I've never considered myself as being "hyper flexible," though. I just wonder if it's worth trying to find a doctor who can diagnose this.

  7. It has taken me all of my 60 years and having my daughter genetically tested to finally find out that's what's been going on with me my whole life!
    My body is really angry now in my old age!

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