Living with Adactylia, unilateral
A rare condition present at birth in which the ends of the fingers (not the thumb) are missing on one hand.
Understanding Adactylia, unilateral
It is non-syndromic, which means it doesn't come with a group of other conditions. The thumb is mildly small, and small nail remnants may be on the finger stumps. The hand bones (metacarpals) may be shorter. It is present from pregnancy or at birth.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Short thumb
- Short nails
- Short hand bones (metacarpals)
- Abnormally shaped hand bones
- Extra bone at the end of the little finger
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 lists autosomal dominant inheritance, which means a changed copy of a gene from one parent can be enough. It doesn't name a gene.
Also known as: adactylia unilateral; adactyly of hand, unilateral; congenital absence/hypoplasia of fingers excluding thumb, unilateral; digits 2-5 hypodactyly, unilateral; digits 2-5 oligodactyly, unilateral; terminal transverse defects of hand, unilateral
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 Adactylia, unilateral.
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