Worldwide, FOP affects only about 2, people, or one in 2 million, of all ethnicities, ages and races. Because FOP is such a rare disease, experts believe that 80 percent or more of the cases are misdiagnosed and its prevalence may be much higher than known. Experts in both pediatric and adult orthopedics, orthopedic surgery and rheumatology at UCSF Benioff Children's Hospital are among the few in the country who readily diagnose and treat FOP. The hallmark symptom of fibrodysplasia ossificans progressiva FOP is a malformation of a newborn's big toe.
This malformation, which is apparent at birth, consists of a short big toe with an abnormal turning of the toe called a valgus deviation. During early childhood, most of those with FOP form painful fibrous nodules, or tumor-like swellings, over the neck, back and shoulders. These nodules often develop after a child experiences some sort of trauma to the body, such as a bump or fall.
Episodes also can occur without any warning or may not occur at all. In most cases, the nodules transform into bone during a process known as heterotopic ossification.
When the body starts to generate new bone, the patient usually experiences a painful flare-up. Tissue swelling, joint stiffness and serious discomfort can occur. Some may have a low-grade fever. Flare-ups can last as long as six to eight weeks. The disease then progresses along the trunk and limbs of the body. You can also learn more about genetic consultations from MedlinePlus Genetics. Related Diseases Related Diseases. Conditions with similar signs and symptoms from Orphanet. Differential diagnosis includes progressive osseous heteroplasia, osteosarcoma, lymphedema, soft tissue sarcoma, desmoid tumors see these terms , aggressive juvenile fibromatosis, and non-hereditary acquired heterotopic ossification.
Visit the Orphanet disease page for more information. Research Research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, enter the disease name in the "Text Search" box. Then click "Submit Query". Patient Registry. Organizations Organizations. Organizations Supporting this Disease. Do you know of an organization? Living With Living With. This initiative speeds up the processing of disability claims for applicants with certain medical conditions that cause severe disability.
More information about Compassionate Allowances and applying for Social Security disability is available online. Learn More Learn More. Where to Start 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.
This website is maintained by the National Library of Medicine. The National Institute of Arthritis and Musculoskeletal and Skin Diseases NIAMS support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases.
Click on the link to view information on this topic. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them. In-Depth Information Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free. The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers.
This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge. PubMed is a searchable database of medical literature and lists journal articles that discuss Fibrodysplasia ossificans progressiva.
Click on the link to view a sample search on this topic. Have a question? References References. Fibrodysplasia ossificans progressiva. FOP Fact Sheet. International Fibrodysplasia Ossificans Progressiva Association.
Pignolo R, Kaplan F. Pediatric Fibrodysplasia Ossificans Progressiva. Do you know of a review article? Share this content:. Close Copy Link. You May Be Interested In.
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