Reply To: Anyone out there with CACNA1S related myopathy?!
HI Speller1 and welcome to forum
There is some really good facebook groups for CMD conditions. There is a lot of parents of the various conditions from Uk, Europe and the US. You will also see first hand real time accounts of parents and their kids from birth upwards. Teens. adults with CMD conditions even if its not exact match to your family’s MD path.
What I would say even people with my exact gene anomaly haven’t all tracked the same as myself. Some of us are ventilated. some from earlier than others while some have no vent need right into 60-70s. Same as with walking. There isn’t always a reason to why certain goals or milestones are met or when.
Facebook groups
Trailblasers (mduk group)
Living with Md
Cure CMD