Living with Polydactyly of a triphalangeal thumb
A rare limb difference in which the thumb has an extra bone and may be duplicated, sometimes with syndromes such as Holt-Oram.
Understanding Polydactyly of a triphalangeal thumb
The thumb can differ widely in shape and may be bent sideways. It can occur with other syndromes, including Holt-Oram syndrome and Fanconi anemia.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Thumb with three bones that can still be moved against the fingers
- Extra thumb or duplicated thumb bones
- Extra little finger or extra toes
- Duplicated big toe bone
- Webbed fingers or toes
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 name a gene. It is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: polydactyly of triphalangeal thumb; polydactyly, preaxial type 2; polydactyly, preaxial type ii; ppd2; preaxial polydactyly type 2; triphalangeal thumb-polydactyly 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 Polydactyly of a triphalangeal thumb.
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