Living with Femur-fibula-ulna complex
A rare limb condition present from birth with differences in the thigh bone, the outer lower leg bone, and the forearm bone.
Understanding Femur-fibula-ulna complex
Finger or toe differences on the same side can also occur. Limb differences are uneven. The arms are more often affected than the legs, and the right side more often than the left. The spine, internal organs and thinking skills are usually normal.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Differences in the forearm (ulna or radius) bone
- Missing or short fibula or femur
- Short upper arm bone (humerus)
- Fused arm bones at the elbow
- Split hand or webbed fingers
- Arms of different sizes
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
Changes in genes cause it. GARD doesn't name a gene or describe how it is inherited.
Also known as: femur fibula ulna complex; femur-fibula-ulna dysostosis; femur-fibula-ulna syndrome; ffu (femur, fibula, ulna) complex; ffu complex; ffu syndrome
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 Femur-fibula-ulna complex.
Explore research for Femur-fibula-ulna complex
Explore actively recruiting Femur-fibula-ulna complex studies with HealthSpark.
Find actively recruiting studies for Femur-fibula-ulna complex with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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