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  1. Kim Carberry

    My youngest is a rare one with her with her type of hearing loss….After playing at being a guinea pig with her heart condition I said no to the doctors using her for her research with her ears….
    Good on you for letting them prod and poke you…I would have got sick eventually too.
    Zebra’s are special and so are you!

  2. Debbie

    Hi Anne, reading your post reminded me of when Gregs was admitted to hospital for test after painful test. He was only about eight at the time. He had an EMG and it was the worst thing I ever had to sit and witness. He doesn’t feel pain like we do, but he felt that. The Doctors kept calling him a medical mystery as they suspect muscular dystrophy and then Charcot Marie Tooth and it turned out to be neither. We left the hospital with a diagnosis of an unknown myopathy, which is now official. The diagnosis of autism came much later and I believe was overlooked partly because of the myopathy (coupled with medical incompetence)… That saying is so right. Doctors much learn that not everyone is a horse, that would make life far too easy… I hope that one day you will be able to walk again too. I’m sure you have your down days, but I do admire your tenacity.

    xx

    • Anne Sweet

      I know a lot of people who fear the EMG, I guess I’m lucky i didn’t feel a thing. My only concern was rolling over, I knew he’d but needles in me but I didn’t know he’d taken them out again and I was afraid of rolling over onto my back! My daughter was the opposite, she was diagnosed with Autism and her other conditions were largely ignored because of it. That’s until her neck broke, even then they wouldn’t believe that she hadn’t had an accident.
      Yes, Drs definitely need to look outside the box sometimes.
      xx

  3. Susan B

    I am also a zebra: my diagnosis took 45 years.

    I actually diagnosed myself and luckily had a good GP at the time who, although she had never heard of my rare disease, kindly agreed funding to get confirmation of my self-diagnosis. Even now, despite the specialist’s confirmation of my diagnosis being on my records, doctors still doubt me simply because they have never heard of it and their default position is that a patient couldn’t possibly know more than they do.

    British GPs need much more training on rare diseases and British patients need much better support and funding for research into rare diseases.

    Thank you for your post. Hooray for Rare Diseases Day.

  4. wendy

    Oh lovely, I really hope you get your wish and one day you are able to walk again. My Dad has a really rare disease too and I know he would wish to be a horse as well, no doctors really no what is going on with him and his had so many misdiagnosis before they all sort of decided on the most likely thing it could be. Sending you lots of good vibes and, by the way, I always thoughts zebras were pretty awesome xx #blogcrush

  5. Lisa Pomerantz

    Raisie Bay, I do hope your zebra turns to a horse — that they find out the why’s and hows and allow you the ability to walk again. I am so sorry fo ryour suffering. Don’t give up. You are wise and strong and must believe that one in a million can be a good thing too! Sending hugs #blogcrush

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