Living with Emery-Dreifuss Muscular Dystrophy, or caring for someone who does, puts you in a particular kind of uncertainty. The early contractures in the ankles, elbows, and neck, the slowly progressing humeroperoneal weakness, and then — often without much warning — the cardiac complications that carry the highest risk to life.

If you've been dealing with a joint that swells, aches, or just doesn't feel "clean" long after some forgotten scrape, splinter, thorn, or puncture wound, you already know the frustrating part: the story doesn't match the exam.