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  1. Helena

    I had not heard of this day but think it is great you are writing about your experience and letting others know they are not alone. There is so much to learn medically that often other doctors are called in to offer their advice. #MMBC

  2. Debbie

    Hi Anne, it was hard enough getting a diagnosis for Gregs Aspergers and myopathy (that they still can’t put a name to), so I can’t imagine just how frustrating having getting a rare disease diagnosed… When I was growing up we used to holiday with this other family with two children the same age as me and my sister. Back then both children seemed no different than any other children, but neither reached their 40h birthdays. In their teens they both started developing strange symptoms that were put down to everything from Parkinson’s to MS, it turned out they both had a disease that was so rare it didn’t even have a proper name, it was just a number and only affected a handful of people worldwide. It was very, very sad to witness their health deteriorate and what the parents went through no parent should ever have to go through. The parents are still good friends of my parents and talk about their children openly. It’s days like this that will hopefully raise awareness for those rare diseases… And I can never remember the ‘name’of the disease either.

    xx

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