Living with Congenital knee dislocation
A rare condition present from birth in which the knee bends backward too far or stays bent.
Understanding Congenital knee dislocation
The knee either hyperextends beyond straight with limited bending (genu recurvatum), or stays bent with limited straightening (genu flexum). It can affect one or both knees. It can occur alone, with other bone and joint differences such as hip dysplasia or clubfoot, or as part of a syndrome.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes:
- Knee bent backward too far
- Knee that stays bent
- Limited knee movement
- Can affect one or both knees
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 cause this condition, but doesn't list a specific gene or inheritance pattern.
Also known as: congenital dislocation of knee; congenital knee dislocation (disease); dislocated knee since birth
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 Congenital knee dislocation.
Explore research for Congenital knee dislocation
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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