It's been a long road
Aug 29, 2017
By: Peter
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I was born with the condition Nemaline Myopathy & have always had muscle weakness, but I wasn't diagnosed with it until I was 43. I suffer from Ehlers Danlos Syndrome and in my long trail of searching for help and answers for that condition I ended up at Newcastle Genetics centre after it was suspected that I had some form of Myopathy. At the genetics centre I became a participant in the 100,000 Genomes Project, it was after they mapped my genome that I was informed that I had Nemaline Myopathy (I was also informed of the result of a prior muscle biopsy which showed the same result).
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