Fibrodysplasia Ossificans Progressiva is a rare genetic disease in which a person’s bones will begin to form into the muscles, tendons, ligaments, joints and connective tissues. Overtime the development will restrict a person’s movement. It has been described as turning a person into stone because their body is essentially encased by a second skeleton.
2. What are the initial symptoms?
Symptoms of Fibrodysplasia Ossificans Progressiva, include: an infant being born with short, bent or a curved big toe or swelling in shoulders or back areas that may look like tumors. A toddler may scoot across the floor on their butt verses crawling; subsequently, a person with this rare genetic disease may experience stiffness, locking or …show more content…
A slip and fall could cause a flare-up and increase the risk of more bone formation. This could be as simple as removing throw rugs from the home, installing bars in the shower and near the toilet, and handrails on staircases. Other preventative measures, include: avoiding intramuscular injections, practicing good oral hygiene, avoiding tight clothing, shoes and any physical activities that require rigorous movements.
5. What are the treatment methods?
Unfortunately, there is no cure or effective treatment for Fibrodysplasia Ossificans Progressiva patients. However, it can be managed with lifestyle changes to help prevent injury which may cause bone to form. Furthermore, nonsteroidal anti-inflammatory drugs (NSAIDS) can be used to help with pain and inflammation during a flare-up.
Side Note – Accutane, a drug normally used to treat Acne, may help in stopping the development of bone to form in the connective tissues. There is limited research on the use of Accutane, and it is not known if it is safe and effective for FOP patients.
http://www.ifopa.org/what_is_fop
https://ghr.nlm.nih.gov/condition/fibrodysplasia-ossificans-progressiva#inheritance