Living with Tibio-fibular synostosis
A rare condition in which the two lower leg bones are fused, sometimes with a bowed leg or uneven leg length.
Understanding Tibio-fibular synostosis
The fusion can be near the knee or the ankle. It is often linked with uneven leg length, a bowed calf bone, and knock-knee shape. It is not part of a larger syndrome.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet, but the summary describes these features:
- Fused shin and calf bones
- Uneven leg length
- Bowed calf bone (fibula)
- Knock-knee shape (valgus deformity)
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.
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 changes in genes (variants) cause this condition, but it doesn't name a specific gene.
Also known as: congenital tibio-fibular fusion; tibio-fibular fusion
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 Tibio-fibular synostosis.
Explore research for Tibio-fibular synostosis
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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