Their tissue turns to bone. Their joints freeze in place. And, finally, their hopes for treatment may be realized
Most of the time, Whitney Weldon doesn’t think about her second skeleton.
She was 9 the first time it really flared up. Bridges of bone grew from nowhere to freeze her right arm at a 120-degree angle, an excruciating experience that felt “like your bones are trying to come out of your skin,” she said. A decade later, her second skeleton sprouted struts of bone that locked the other arm in place, this time at 180 degrees. Weldon, then a high school senior, gave herself a month to accept that she could no longer drive, no longer put on a shirt without help. And then she started preparing for college.
“It’s all these new normals that you have to get used to,” said Weldon, now 27. “You have to grieve a part of you that you can no longer use. And then you have to move on.”
Weldon is one of about 800 people in the world with fibrodysplasia ossificans progressiva, or FOP. It’s a grim genetic disease in which the body’s machinery for healing goes awry, growing immovable bone where it doesn’t belong. Minor injuries can lead to debilitating inflammation that leaves limbs unusable. And even a life of caution can’t stop its progress. As time goes on, those second
