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    • #12358
      Leah Leilani
      Keymaster

      Do you feel like an outcast because of your disease? Do you feel as though no one understands you, not even your doctors? Does this make you feel lonely?

      Having a rare disease can be frustrating at times. Finding a diagnosis makes you feel as if you’re a guinea pig, being poked with needles and shoved under a microscope. Your classmates know nothing of the separate life you live at the hospital.

      As I’ve gotten older, I’ve realized that there are advantages to being rare. It almost becomes a sort of identity or reputation. Your voice becomes valuable because people can learn from you and the life you live.

      • This topic was modified 1 year, 10 months ago by Leah Leilani.
      • This topic was modified 1 year, 10 months ago by Leah Leilani.
      • This topic was modified 1 year, 9 months ago by Marta Ribeiro.
    • #12379
      Ralph Yaniz
      Participant

      For me, I think your last paragraph really hits it perfectly.  I like to focus on the ability to help educate people on the diversity of need in our world and I am very focused on getting the word out to as many people as I can.  I also relish the possibility of being involved in testing and clinical trials and at this point I have muscle tissue that I have given  in three different cities in the United States and in one country outside of the US.  Obviously, none of us prefer living with the rare diseases that we have but I am looking forward to a day soon when we can begin to change that genetic material positively.

    • #12400
      Leah Leilani
      Keymaster

      Thank you Ralph for all you are doing for the MD community. Even just advocating for yourself and educating other can help other people down the line. We, as people with MD have a power to change the way we are viewed and make advancements in the medical field.

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