Reader Interactions


  1. Globalmouse

    That must be so nice to finally be able to put a name to it and prove it wasn't just you. Poor you having to go through years of suffering. I hope you can start getting help.

  2. Sarah-Louise Bailey

    This is a really interesting post – I am hypermobile as well and so in some ways feel your pain, I could tick off all the issues mentioned as well, though some can be attributed to Fibro.

    • Anne Stone Sweet

      That's interesting Sarah, because before I heard of EDS I did think that maybe I had fibro. I've never really complained at the GPs much, but now that I'm losing my hands and fingers it's really getting to me. I can survive a day without walking, but not without using my hands.

  3. Happy Homebird

    I didn't know much about Elhers Danlos, in many ways some of the symptoms are like what my son has who has autism with the gut, sleep and brain fog. Also the hypermobility as often can be the case although not to the same extent. It certainly must make you wonder with your daughter's diagnosis is this is what you have struggled with all this time. My son's autism has done the same with me. I hope you can get some answers soon and good luck for your run.

    • Anne Stone Sweet

      Many believe there is a connection between autism and EDS, or maybe just that a lot of people have both. My daughter was diagnosed high functioning autism at aged 6, when she was also diagnosed hypermobile.

  4. Vai Chin

    It is so difficult not knowing the cause behind something. Maybe now you have a diagnosis (or a fair idea what it might be), you can start the healing process xx

  5. Keri-Anne

    How awful. I watched the film Cake the other day and it made me so grateful to suffer like that. Back in january, i had a tooth abscess and the pain had me in tears. I would wake up in the night googling how to get rid of the pain. I just didn't know what to do with myself. x

  6. John Gatesby

    Living with EDS is never easy. I marvel at your tenacity and courage that your have displayed since your childhood. It is not easy to live with EDS but there are lots of people like you, who refuse to budge, accept it and move on with their lives and share their story to spread the awareness.

    I can understand your reluctance to share your symptoms with your parents, this is the problem with most of the patients of the autonomic disorders because from outwards they all look normal and most of the people do not understand the pain you go through.
    John Gatesby recently posted…Do I Have Mast Cell Activation Syndrome (MCAS)?

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