Fibrodysplasia Ossificans Progressiva Also called FOP for short has affected over 800 diagnosed patients worldwide with one of the most active patient groups in the USA with about 300. This disease is very debilitating because you are not able to control the bone growth easily and once the fibrous tissues have begun forming cartilage there is little hope. High doses of the steroid Prednisone is given immediately at the first signs of a flare up or any injury from falling or general day to day life to slow down the progression.
There are 47 people in the Fibrodysplasia ossificans progressiva map
There will be hectopic bone growth and loss of movement in major joints until there is a second skeleton that restricts all movement.
Currently there is no treatment available to stop FOP just pain management. On the horizon there are possible treatments that are being peer reviewed and studied for long term success via live patient trials and natural history studies
1 people with Fibrodysplasia ossificans progressiva have taken the SF36 survey. Mean of Fibrodysplasia ossificans progressiva is 1985 points (55 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey