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spion Message
24 Mar 2009, 10:33 AM

Hi anyone, everyone, quite happy to talk bout any aspects of this illness, not an expert but have been living with it for 15 years. spion
Muroc Message
5 Oct 2009, 08:16 AM

Hi spion, Yes please ! - cannot find much except the clinical side of desmin related myopathy. I was diagnosed a few weeks ago. Was an active 50 year old, could run up and down stairs etc. now, 12 months later, I'm in a wheel chair - legs are useless - and my arms and hands are going the same way. Cheers