You wake up in the morning and your shoulders feel like they have been encased in concrete overnight. Rolling over to get out of bed requires a mental rehearsal before the physical act. By the time you have shuffled to the bathroom, your hips and upper arms have joined the protest.

Facioscapulohumeral muscular dystrophy (FSHD) is not a simple genetic disease. Unlike conditions where a gene is broken or missing, FSHD is caused by a gene that should be permanently silent — waking up in tissue where it has no business being active.