Living with Legg-Calve-Perthes disease
A childhood hip condition in which the ball of the thighbone loses its blood supply, causing limping and hip pain.
Understanding Legg-Calve-Perthes disease
It usually starts in childhood. Early symptoms may include limping, pain in the hip, thigh, or knee, and less hip movement. Later, one leg may be longer than the other and muscles around the hip may waste away. Some people develop arthritis as adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Limping
- Joint pain in the hip, thigh, or knee
- Reduced hip movement
- Death of bone from poor blood supply (avascular necrosis)
- Muscle wasting around the hip
- One leg longer than the other
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.
- 3Consider genetic testing
Changes in COL2A1 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
- 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 Arthritis Foundation 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
The cause is often not known. It can follow other hip problems or injury. It usually is not caused by genes, but a few families with COL2A1 changes and autosomal dominant inheritance have been reported.
Also known as: aseptic necrosis of capital femoral epiphysis; aseptic necrosis of the capital femoral epiphysis; avascular necrosis of capital femoral epiphysis; avascular necrosis of the capital femoral epiphysis; calve - perthes' disease; coxa plana
Patient organizations
- Arthritis FoundationLegg-Calve-Perthes disease · United States
- Perthes Kids FoundationLegg-Calve-Perthes disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Legg-Calve-Perthes disease.
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