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3 Responses

  1. GirlWithTheCane
    GirlWithTheCane February 13, 2014 at 4:06 pm | | Reply

    Spot on. Excellent article.

  2. Lesley
    Lesley February 14, 2014 at 5:14 am | | Reply

    Brilliantly stated, written and inspired, Elsa, thank you. It’s not possible to take issue with anything you’ve said, although, I kind of wondered why you stopped at 50. I’m a disabled adult going on 60 this year.

  3. kat
    kat February 16, 2014 at 8:22 pm | | Reply

    The lack of support is painful. I have mitochondrial disease and have been endlessly searching for any resources for adults. They just don’t seem to exist. I noticed today after a hunch that all the websites are partnered with autism speaks.

    The forums are full of parents. The blog sites are also full of parents. Even with the internet I’ve only made a single friend with my condition.

    The worst part is probably the treatments are all based on children so every time I search for something like pain treatment I just get a bunch of stuff on the difficulties medicating small children without pain killers. I am not a small child, none of this is relevant.

    It will probably kill me, but very slowly. I’ve almost run out of treatments already and I’m only 24. I have a hard time opposing the death with dignity things when I am in a position to possibly need it’s help eventually.

Please comment politely with a regular pseudonym or real name.

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