Fighting the Second Skeleton

Fibrodysplasia ossificans progressiva is an incredibly rare disease, striking just one out of every two million people. It's also an incredibly astonishing disease. A single mutation to a single gene causes muscles to spontaneously turn into new bones. Over time, people with fibrodysplasia ossificans progressiva (FOP for short) grow a second skeleton--one that can cut their lives short.

I wrote about FOP in "The Girl Who Turned to Bone" in the Atlantic in 2013. At the time, FOP served as a microcosm for the struggles of people with rare diseases. (In the United States, almost 30 million people have rare diseases of one kind or another.) Rare diseases have historically attracted little interest ...

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