Living with Progressive myositis ossificans
A rare genetic condition in which muscles and connective tissue slowly turn into bone, limiting movement.
Understanding Progressive myositis ossificans
This extra bone forms outside the skeleton and limits movement. It usually becomes noticeable in early childhood, starting at the neck and shoulders and moving down the body and into the limbs. People are born with an unusual shape to the big toes, which can help with diagnosis. Injuries, medical procedures, or viral illness can trigger flare-ups of muscle swelling and inflammation. Flare-ups last days to months and often leave permanent bone growth.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bone growing in muscle and ligaments (ectopic ossification)
- Unusual big toes (hallux valgus)
- Limited joint movement
- Firm lumps under the skin
- Neck bones that are fused together
- Hearing loss
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include bone and joint specialists, brain and nervous system specialists, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in ACVR1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with International Fibrodysplasia Ossificans Progressiva Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
FOP is almost always caused by a genetic change at the same spot in the ACVR1 gene. It is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: diffuse progressive ossifying polymyositis; fibrodysplasia ossificans congenita; fibrodysplasia ossificans progressiva; fop; fop - fibrodysplasia ossificans progressiva; myositis ossificans progressiva
Patient organizations
- International Fibrodysplasia Ossificans Progressiva AssociationProgressive myositis ossificans · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Progressive myositis ossificans.
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