Overview
Mononen-Karnes-Senac syndrome is an extremely rare genetic condition that primarily affects the development of the hands and feet. The syndrome is characterized by a specific pattern of limb abnormalities, most notably the absence or underdevelopment of certain fingers and toes (oligodactyly), particularly affecting the ulnar (pinky-finger) side of the hands. Individuals with this condition may also have abnormalities of the bones in the forearms and lower legs. The condition is present from birth and is typically noticed right away due to the visible differences in the hands and feet. Because this syndrome is so rare, with only a handful of cases described in the medical literature, our understanding of the full range of symptoms and the best approaches to care is still limited. There is no cure for the underlying condition. Treatment focuses on managing symptoms and improving function. This may include orthopedic surgery, physical therapy, occupational therapy, and the use of adaptive devices to help with daily tasks. The overall health and life expectancy of affected individuals are generally not severely impacted beyond the limb differences, though each case may vary. Families affected by this condition benefit from working closely with a team of specialists to address individual needs.
Also known as:
Key symptoms:
Missing or underdeveloped fingers, especially on the pinky side of the handMissing or underdeveloped toesAbnormal forearm bonesAbnormal lower leg bonesShortened or absent ulna bone in the forearmReduced number of fingers (oligodactyly)Reduced number of toesDifferences in hand and foot structure visible at birth
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Mononen-Karnes-Senac syndrome.
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Specialists
View all specialists →No specialists are currently listed for Mononen-Karnes-Senac syndrome.
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 Mononen-Karnes-Senac syndrome.
Community
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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 pattern of bone and limb differences in my child's case?,Would genetic testing help us understand the cause or help with family planning?,What surgeries, if any, might improve hand or foot function?,What types of therapy would be most helpful right now?,Are there adaptive devices that could help with daily tasks?,How often should we schedule follow-up visits during growth?,Are there any research studies or registries we should consider joining?
Common questions about Mononen-Karnes-Senac syndrome
What is Mononen-Karnes-Senac syndrome?
Mononen-Karnes-Senac syndrome is an extremely rare genetic condition that primarily affects the development of the hands and feet. The syndrome is characterized by a specific pattern of limb abnormalities, most notably the absence or underdevelopment of certain fingers and toes (oligodactyly), particularly affecting the ulnar (pinky-finger) side of the hands. Individuals with this condition may also have abnormalities of the bones in the forearms and lower legs. The condition is present from birth and is typically noticed right away due to the visible differences in the hands and feet. Becaus
How is Mononen-Karnes-Senac syndrome inherited?
Mononen-Karnes-Senac syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Mononen-Karnes-Senac syndrome typically begin?
Typical onset of Mononen-Karnes-Senac syndrome is neonatal. Age of onset can vary across affected individuals.