What is Fibrodysplasia Ossificans Progressiva (FOP)?
Disease where connective tissue turns to bones.
What hardenings and stiffens in FOP patients?
Bones and Joints
Is this a lifelong condition?
Yes, there is no cure or definitive treatment.
Where does bone formation occur in FOP?
Muscle, tendons, and ligaments
What is the first sign of FOP?
How can quality of life be improved?
Accessibility products such as flexible cutlery, shoe funnels, magnetic buttons.
Why does FOP occur?
Genetic condition due to a mutation in the gene for bones.
What level of mobility do you have with FOP?
Decreased mobility or Permanent immobility occurs and most patients are wheelchair bound in their 20's.
How to prevent flare-ups?
Avoiding injuries, infections or surgery
When does it happen?
Onset before age of 10 and no ethnic, racial, gender or geographic locations likelihood for FOP.
What is impacted occurs when growth happens in the jaw and neck?
Difficulty hearing and speaking
How are flare-ups treated for FOP?
Steroids
What is unique about this disease?
Only known medical disease in human body where tissue of one organ system changes into another.
What is common reason for death?
Thoracic Insufficiency Syndrome-an abnormality in the chest wall. Death is usually by 40 years old of age.
90%