Living with Fibrous dysplasia
A bone condition in which normal bone is replaced with fibrous tissue, sometimes causing pain, bone shape changes or fractures.
Understanding Fibrous dysplasia
It can involve one bone or many bones, and can affect any bone. Common sites are the skull, face, arm and leg bones, pelvis, and ribs. Many people have no symptoms. Others have bone pain, bone shape changes, or a higher risk of fractures. It can occur alone or as part of a genetic disorder such as McCune-Albright syndrome.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bone pain
- Bone shape changes (deformities)
- Fractures from minor stress
- Bowed long bones
- Legs of different lengths and limping
- Facial or skull bone changes
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
FD/MAS Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- Expert care
- Expert lists: FD/MAS Alliance
- 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 FD/MAS Alliance 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
Changes in genes cause it. GARD doesn't name a gene.
Also known as: fibrous dysplasia of bone; fibrous dysplasia of the bones; jaffe-lichtenstein syndrome; osteitis fibrosa
Patient organizations
- FD/MAS AllianceFibrous dysplasia · United States
- The MAGIC FoundationFibrous dysplasia · United States
You are more than your diagnosis
Perspectives from people navigating life with Fibrous dysplasia.
Explore research for Fibrous dysplasia
Explore actively recruiting Fibrous dysplasia studies with HealthSpark.
Find actively recruiting studies for Fibrous 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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