How Bad Can Ehlors-Danlos Syndrome Get? Really, Really Bad

Discussion in 'Symptoms' started by Cort, Apr 9, 2015.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Ehlor Danlos syndrome (hypermobility syndrome) causes a weakening of collagen in your connective tissues. There's a substantial overlap between it, ME/CFS and POTS.

    How bad can it get? This young womans connective tissue is so weak that her brain stem is gradually being crushed by her skull (!).
     
  2. Issie

    Issie Well-Known Member

    Yes, it can get bad. Nina is a friend of mine. She will be in the USA having surgery to try to help with her issues this week. She is coming from outside of London. The medical system there wasn't able to operate on her. A big fundraising has occurred and the doctor in NY is working with her to do the surgery. Nina also has POTS. We hope that will improve too when she has her head stabilized. It's, from what I understand, so wobbly it's like she is decapitated. I hope all goes well with the fusions and stabilization. We can't get over having EDS, but it's good maybe some of the worst things that could possibly happen to us, has doctors willing to help us. Here's hoping for GOOD NEWS Nina. Hang tight!!! Im hoping life is about to start improving for you.

    Issie
     
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Issie and AnneVA like this.
  4. Issie

    Issie Well-Known Member

    Yes. I hope she recovers well and gets her life back.

    She is a sweetheart, always concerned about others despite her suffering. It will be wonderful for her to be able to be upright and functioning again. So much she has learned and more to learn - now she has the chance.

    Issie
     
    Last edited: May 3, 2015
  5. Issie

    Issie Well-Known Member

    I heard from Nina. She is recovering. It's a slow go, but she is already seeing improvement. She said she couldn't believe how painful the surgery was. But she feels it will be worth it.

    Issie
     
    Snookum96 likes this.
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Thanks for the update. I imagine there are no easy answers until they get to the bottom of the connective tissue problems.

    The NIH does not track Ehlor's Danlos Syndrome spending by the way.
     
  7. Issie

    Issie Well-Known Member

    I'm so very sad. I had not heard from Nina in awhile. Last time I talked to her she told me she was having a very hard time of recovery. And she had a hard time being on her computer. Since I have EDS too, she offered to look at my x-rays and tell me what she saw. (She always wanted to help others and no matter how bad she felt - she was kind and caring.) I just learned Nina went to sleep in death in Jan. She is no longer in the pain she experienced daily. It's very sad that she fought so hard for help and even though she finally got surgery - she still didn't survive. I will miss her. Here is the post from her mother.
    https://m.facebook.com/ChiariJourney/posts/1982696761998399
    My deepest condolences go out to her parents and those who loved her.
    Issie
     
    Merida, lisaadele and Paw like this.
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