Jeannie Peeper has a very rare and puzzling condition, fibrodysplasia ossificans progressiva (FOP), in which her body grows extra bone material. She showed signs since birth, but was only diagnosed at age four.
The name meant nothing to Peeper’s parents—unsurprising, given that it is one of the rarest diseases in the world. One in 2 million people have it.
Peeper’s diagnosis meant that, over her lifetime, she would essentially develop a second skeleton. Within a few years, she would begin to grow new bones that would stretch across her body, some fusing to her original skeleton. Bone by bone, the disease would lock her into stillness. The Mayo doctors didn’t tell Peeper’s parents that. All they did say was that Peeper would not live long.
“Basically, my parents were told there was nothing that could be done,” Peeper told me in October. “They should just take me home and enjoy their time with me, because I would probably not live to be a teenager.”
The problem of rare diseases is that few resources are dedicated to fighting them. But Peeper took matters into her own hands and connected with a couple dozen other people worldwide who suffer from FOP. She interested medical researchers in her condition. And she's in her fifties now, confined to a wheelchair but still alive and still fighting for help for people with FOP. Read Peeper's story and learn what it's like to have such a rare and confounding genetic disease in an article by Carl Zimmer at the Atlantic. Link -via The Loom
(Image credit: Ethan Hill)