Fibrodysplasia ossificans progressiva

How is fibrodysplasia ossificans progressiva inherited?

Fibrodysplasia ossificans progressiva is inherited in an autosomal dominant pattern, which means one copy of the altered gene in each cell is sufficient to cause the disorder.

Most cases of fibrodysplasia ossificans progressiva result from new mutations in the gene. These cases occur in people with no history of the disorder in their family. In only a small number of cases, an affected person has inherited the mutation from one affected parent.

Last updated on 05-01-20

How might fibrodysplasia ossificans progressiva be treated?

There is currently no definitive treatment. However, a brief course of high- dose corticosteroids, such as Prednisone, started within the first 24 hours of a flare-up, may help reduce the intense inflammation and tissue swelling seen in the early stages of fibrodysplasia ossificans progressiva. Other medications, such as muscle relaxants, mast cell inhibitors, and aminobisphosphonates, if appropriate, should be closely monitored by a physician. Surgery to remove heterotopic and extra-skeletal bone is risky and can potentially cause painful new bone growth.

Last updated on 05-01-20

Where To Start

International Fibrodysplasia Ossificans Progressiva Association

Support guidebooks published by the International Fibrodysplasia Ossificans Progressiva Association contains information about research and treatment options, as well as articles by parents of affected children and adults with FOP offering insights into the condition.

Last updated on 04-27-20

Name: International Fibrodysplasia Ossificans Progressiva Association 1520 Clay Street, Suite H2
North Kansas City, MO, 64116, United States
Phone: 407-365-4194 Fax : 407-365-3213 Email: http://www.ifopa.org/about-the-ifopa/contact-us.html Url: http://www.ifopa.org/
Name: UCSF Fibrodysplasia Ossificans Progressiva Clinic 533 Parnassus Ave. UC Hall U-504 Box 0734
San Francisco, CA, 94143, United States
Phone: 415-476-7242 Toll Free: 888-689-8273 Email: referral.center@ucsfmedctr.org Url: http://www.ucsfbenioffchildrens.org/conditions/fibrodysplasia_ossificans_progressiva/index.html
Name: Greenberg Center for Skeletal Dysplasias Johns Hopkins University Institute of Genetic Medicine
600 North Wolfe Street Blalock 1008
Baltimore, MD, 21287, United States
Phone: 410-614-0977 Email: deedee@jhmi.edu Url: http://www.hopkinsmedicine.org/institute-genetic-medicine/patient-care/genetics-clinic/about/greenberg-center-skeletal-dysplasia/

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