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    • #16680

      Sunday, February 28, is Rare Disease Day 2021. What does being rare mean to you? Do you agree or disagree with this phrase? How does having muscular dystrophy impact your identity and how you perceive yourself? In what ways does being part of a larger community of people who also have or are affected by muscular dystrophy impact your daily life?

      Will you be posting to social media for Rare Disease Day?

    • #16693
      Karl Evans
      Participant

      I agree with the phrase, although it is often ignored or misunderstood.  In the area where I live, Oregon, there are probably not 4 physicians that have any interest in working with someone’s rare disease. If I have a real problem, I call MD Anderson in Houston or New Orleans or Phoenix. Mostly, it means I have to do my own research and treatment, which means just get old and die.  I guess I am just getting tired of being ignored by people who just want to give you a prescription for aspirin, and a piece of advice: Make peace with the mortician.

      • #16694

        You aren’t alone. The majority of rare disease patients have to do their own research and find treatments that best work for them. Everyone is different, and what might work for one does not work for others. Unfortunately, it seems that where you live doesn’t have a support system you need, but it is great to reach out to places in Houston or New Orleans when you need to talk to someone about MD. Are you part of a social media group for your type of MD?

        As per your last statement, I believe when we are born we being to die, life is hard with or without MD, most people have to create the life they want and I think attitude has a lot to do with it. No one can be happy 24/7 but we can be satisfied with the effort we put into our lives and how we feel.

        Thanks for posting, Karl.

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