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'The body thinks the injured muscles are fractures and heals them as if they were fractures,' he said. He said FOP patients have an overactive copy of the abnormal gene that sends signals to the body's muscles and soft tissues - especially after an injury - telling the muscles to repair themselves by forming bone rather than muscle or scar tissue. It is caused by mutations in a gene called ACVR1, which regulates bone growth and turns cartilage to bone as children grow up.įrederick Kaplan, Floyd's doctor and head of the Division of Orthopaedic Molecular Medicine at the University of Pennsylvania's Perelman School of Medicine, said he and his colleagues discovered the FOP gene in 2006. My jaw gets tired easily.'įOP is a rare and debilitating disorder that plagues about one in 2 million people worldwide, according to data from the National Institutes of Health. I never used to have any dietary needs, but now I have to avoid crunchy or chewy foods.

'I've accepted it the best I can, but it's not something I can put behind me,' she said. It was about a year ago, Floyd said, when her jaw started locking, which 'has been the most traumatic thing I've ever had to deal with.' Now, she said, she can open her mouth about a centimeter. 'Now when something happens, I know what's happening and why it's happening.'īut it does not make it any easier to live that way. 'As I got older, I started to learn more about what FOP was,' she said. She uses a long hairbrush to brush her hair and also to help pull on her shirts, laughing about the MacGyver-like skills she has acquired over the years. She now relies on a 'reacher' to pick up things.

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She had to relearn how to ride a bike - and soon, how to do simpler tasks, such as switch on lights and turn on water faucets. Since then, there have been bad mornings when the now-23-year-old from Danielson has woken up with a tight neck or an elbow locked in place, then slowly but permanently lost the ability to move them.īy the time she was 7 or so, Floyd said, her shoulders had started sticking gradually, she found herself unable to rotate them.

One spirit two skeletons