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Stephen's local health board has no record of him, despite his diagnosis of Facioscapulohumeral muscular dystrophy (FSHD) 22 years ago. The only specialist he sees is a neurologist 90 miles away from his home in Dumfries - a distance too far for him to travel, so he has yearly appointment over the phone. ☎️ "The lack of knowledge in Dumfries is isolating," he said. He worries about how fast he his deteriorating - last year he was ambulant and today he can't walk more than 20 metres, "It would be hard to deal with even if I had the support of medical professionals around me, but feeling like you’re navigating the changes all on your own is scary." ✉️ Services need to improve in Scotland. Email your MSP today.