Living with Familial avascular necrosis of the femoral head
A hip condition in which the top of the thigh bone breaks down due to poor blood supply, causing pain and limping.
Understanding Familial avascular necrosis of the femoral head
It can cause pain, limping, hip collapse, and legs of different lengths. It mainly affects young, active adults but can occur in children, where it is called Legg-Calve-Perthes disease. Causes include steroid use, alcohol, smoking, autoimmune disorders, and hip injury. Most people have no family history, though rare inherited forms exist.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hip pain
- Groin pain
- Limited hip movement
- Limping or a short, shuffling walk
- Legs of different lengths
- Hip arthritis
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 autoimmune and inflammatory disease specialists, 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
- autoimmune and inflammatory disease specialists (rheumatologists); 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 the rare inherited forms, which are autosomal dominant. In most people, other factors are linked, such as steroid use, alcohol, smoking, or injury.
Also known as: aseptic necrosis of femoral head; aseptic necrosis of head of femur; familial avascular necrosis of femoral head; familial avascular necrosis of head of femur; familial osteonecrosis of the femoral head
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 Familial avascular necrosis of the femoral head.
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