Apparently there are only 45 known cases:
FOP (fibrodysplasia ossificans progressiva) is a progressive disease in which new bone forms in muscles around bones and joints in the body. It is a very rare condition with no cure. There are about 45 known cases in the UK. Patients become gradually more disabled as extra bone forms across joints, restricting movement and locking joints in place – sometimes in uncomfortable positions.
In FOP, the formation of new bone often follows inflammation as a result of injury or trauma. No one knows why inflammation or ‘flare-ups’ in FOP patients leads to bone formation. And immobilised joints can’t be released – any surgery would exacerbate the condition. The only treatment – other than trying to avoid injury – is corticosteroids, which appears to help in the early stages of FOP. It doesn’t stop progression of the disease but may ameliorate the condition.
Seanie Nammock is 14 years old. She likes make up, clothes and loves cooking. She listens to Lady GaGa, Beyonce, and Lily Allen and is to be a bridesmaid at her cousin’s wedding. She’s done one of her Science GCSEs two years early and dreams of being a vet.
In the summer of 2008, Seanie had a minor accident on a trampoline. A couple of weeks later, a large lump developed on her back. After a lot of going back and forth to the hospital, she was diagnosed with FOP in September 2008.
Seanie says, ‘When I was eventually told what my condition was and what the outcome could be, I just thought “Oh well, I just have to get on with my life and I won’t let it stop me from doing what I want.”’
Her neck now has little movement and her left and right arms have locked, restricting what she is able to do.