Overview
Tetramelic monodactyly is an extremely rare congenital limb malformation in which a person is born with only one finger or toe (a single digit) on all four limbs — both hands and both feet. The name comes from 'tetramelic,' meaning affecting all four limbs, and 'monodactyly,' meaning having a single digit. This condition is present at birth and is caused by a problem during early fetal development when the hands and feet are forming. The remaining single digit may vary in its structure and function, and in some cases other bones in the hands or feet may also be affected or simplified. Because this condition is so rare, there are very few reported cases in the medical literature. The exact genetic cause is not fully understood, though some cases appear to run in families, suggesting a genetic basis. There is no cure for tetramelic monodactyly. Treatment focuses on maximizing hand and foot function through adaptive devices, occupational therapy, physical therapy, and in some cases reconstructive or orthopedic surgery. Children and adults with this condition can often learn to perform daily tasks with remarkable adaptation, though they may face challenges with fine motor skills, grip strength, and mobility. Early intervention with therapy and supportive care can significantly improve quality of life.
Also known as:
Key symptoms:
Only one finger on each handOnly one toe on each footReduced grip strengthDifficulty with fine motor tasks like writing or buttoning clothesAltered hand and foot bone structurePossible difficulty with balance or walkingLimited ability to grasp objectsShortened or simplified hand and foot bonesPossible differences in nail formation on remaining digits
Clinical phenotype terms (2)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Tetramelic monodactyly.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Tetramelic monodactyly at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Tetramelic monodactyly.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Tetramelic monodactyly.
Community
No community posts yet. Be the first to share your experience with Tetramelic monodactyly.
Start the conversation →Latest news about Tetramelic monodactyly
No recent news articles for Tetramelic monodactyly.
Follow this condition to be notified when news becomes available.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What is the exact bone structure of my child's hands and feet, and how does it affect function?,Should we pursue genetic testing to look for a cause, and what would the results mean for our family?,What types of therapy would benefit my child the most right now?,Are there surgical options that could improve hand or foot function?,What adaptive devices or prosthetics are available for someone with this condition?,How can we best support our child's emotional and social development?,Are there limb difference clinics or specialized centers we should visit?
Common questions about Tetramelic monodactyly
What is Tetramelic monodactyly?
Tetramelic monodactyly is an extremely rare congenital limb malformation in which a person is born with only one finger or toe (a single digit) on all four limbs — both hands and both feet. The name comes from 'tetramelic,' meaning affecting all four limbs, and 'monodactyly,' meaning having a single digit. This condition is present at birth and is caused by a problem during early fetal development when the hands and feet are forming. The remaining single digit may vary in its structure and function, and in some cases other bones in the hands or feet may also be affected or simplified. Because
At what age does Tetramelic monodactyly typically begin?
Typical onset of Tetramelic monodactyly is neonatal. Age of onset can vary across affected individuals.