Living with Tetramelic monodactyly
A rare condition present at birth in which each hand and foot has only one finger or toe.
Understanding Tetramelic monodactyly
The difference usually occurs on its own, but missing or underdeveloped bones in the rest of the hands and feet have also been reported. It is present from birth and develops during pregnancy. GARD says there have been no further descriptions in the medical literature since 1992.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fewer than five fingers or toes (oligodactyly)
- Split hand
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 (variants) cause this condition. It is autosomal dominant, so one changed copy of a gene can be enough to cause it.
Also known as: sommer hines syndrome; sommer-hines syndrome; tetramelic monodactyly with autosomal dominant inheritance
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 Tetramelic monodactyly.
Explore research for Tetramelic monodactyly
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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