Living with Osteofibrous dysplasia
A rare, non-cancerous bone tumor, most often in the shin bone of children and teens, that sometimes causes swelling, pain, or bowing.
Understanding Osteofibrous dysplasia
It is most often in the middle of the tibia (shin bone), but can also affect the fibula or arm bones. Many people have no symptoms, and it is found when an X-ray is done for another reason. When symptoms occur, they can include swelling or pain at the tumor, a break in the weakened bone, or bowing of the leg. GARD lists infancy and childhood as the usual onset.
Signs & symptoms
Symptoms vary, and many people have none. GARD lists this among the most common:
- Bone fracture at the weakened spot (pathologic fracture)
- Swelling or pain at the tumor
- Bowing of the leg
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 and genetic specialists.
- 3Consider genetic testing
Changes in MET 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); Genetic specialists (geneticists)
- 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 rare disease patient organizations for support
- 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
GARD says the cause is unknown. It lists the MET gene and autosomal dominant inheritance, meaning one changed copy of a gene can be enough.
Also known as: cortical fibrous dysplasia; kempson-campanacci lesion; ofd; osfd; ossifying fibroma of long bones; osteofibrous dysplasia of bone
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Osteofibrous dysplasia.
Explore research for Osteofibrous dysplasia
Explore actively recruiting Osteofibrous dysplasia studies with HealthSpark.
Find actively recruiting studies for Osteofibrous dysplasia with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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