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FSHD ~ My story



By the age of 10 there were signs not everything was as it should be. I had poor posture, was rather clumsy and tended to breathe through my mouth. During a medical at school my mum raised her concerns. I was then sent along to the local clinic once a week to do exercises which …

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From an early age I always knew I was different. At school I never looked the same as any of my friends, they could all wear trousers, skirts and pretty dresses. I always had a pot belly that made me look like a refugee from a third world African country! I got used to the …

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One hot summer day about 15 years ago I was with my sister and her husband in London waiting to see a consultant at the National Hospital for Neurology and Neurosurgery. As we walked in the door of the doctor’s consulting room and sat down he said to my sister, ‘You have FSH’. When I …

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After two very long years searching for a reason for my progressive muscle loss, the news that I had FSH-MD was almost a welcome relief. My first thought was that I would not have to visit any more doctors and be subjected to the tests and procedures they always recommended. Slowly after reading as much …

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