If you've been told you have cervical myelopathy — or you're watching early signs of it in a parent, a partner, or yourself — you've probably noticed that most of the advice out there stops at the same place: "see a spine specialist," "avoid neck strain," "consider surgery if it progresses." None of that is wrong.

If you or your child has been diagnosed with fibrodysplasia ossificans progressiva, or a doctor has raised it as a possibility after an unusual toe shape and a lump that appeared after a bump or a vaccination, you already know that most health content is not written for you.