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Being Stubborn about Muscular Dystrophy

Being Stubborn about Muscular Dystrophy

I was diagnosed with GNE Myopathy, a form of Muscular Dystrophy, in my late twenties. It is untreatable, and progressively weakening my legs and arms. I know that I only have a few years until I need to use a wheelchair, so I asked myself what I wanted to see when I looked back on this part of my life.

I'd always wanted to travel, so I packed up everything and went to India and Asia for three months this year, with just a walking stick for company. It was really physically (and mentally) challenging, but I am so glad I did it. I was stubbornly determined to at least try, and I proved to myself that I can still do hard things, even if I have to adapt and slow down my approach somewhat.

Now I am building a life that will make me happy, even as I face increasing mobility issues. Things can feel very difficult, but I'm determined to keep finding the best in every situation.

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I have GNE Myopathy (Muscular Dystrophy) but I am stubbornly determined that it won't stop me from pursuing the things that make me happy.

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Joanne Becker

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Being Stubborn about Muscular Dystrophy

I was diagnosed with GNE Myopathy, a form of Muscular Dystrophy, in my late twenties. It is untreatable, and progressively weakening my legs