Living with Hallux varus-preaxial polysyndactyly syndrome
A rare condition present at birth, with big toes that turn inward and extra or joined big toes.
Understanding Hallux varus-preaxial polysyndactyly syndrome
Both big toes (halluces) are displaced toward the middle of the foot and the first toes are extra or joined (preaxial polysyndactyly). X-rays show broad, short, misshapen first foot bones, and may show duplicate toe bones. GARD says there have been no further descriptions in the literature since 1980. It is noticed in the newborn period.
Signs & symptoms
Symptoms vary. GARD lists these among the most common:
- Gap between the first and second toes
- Inward-turned big toes (hallux varus)
- Extra or joined first toes
- Curved little finger (clinodactyly)
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 this condition. A child inherits a changed copy of the gene from each parent (autosomal recessive). GARD does not name the gene.
Also known as: hallux varus and preaxial polysyndactyly; hallux varus, preaxial polysyndactyly syndrome; kleiner holmes syndrome; kleiner-holmes 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 Hallux varus-preaxial polysyndactyly syndrome.
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