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

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