fibrodysplasia?

Question

My grandson, 10 years old, has been diagnosed with fibrodysplasia - how serious is this? It looks as though it is contained in the ankle. The ankle bone has been compromised

Answer 1

Fibrodysplasia ossificans progressiva (FOP), is a rare disease of the connective tissue. A mutation of the body's repair mechanism causes fibrous tissue (including muscle, tendon, and ligament) to be ossified (turned to bone) when damaged. In many cases they can cause joints to become permanently frozen in place. The growths cannot be removed with surgery because such removal causes the body to "repair" the area of surgery with more bone.

People with FOP should use sound judgement in engaging in physical activity, try to avoid falling or getting bruises, and avoid intramuscular injections since these can cause bone to grow. Likewise, people with FOP should never stretch their joints outside of their normal range of motion. However since flare-ups can occur spontaneously, even perfect preventive care cannot guarantee the absence of bone growths.