Overview
Bilateral polysyndactyly is a congenital (present at birth) condition that affects the hands and/or feet on both sides of the body. The term 'polysyndactyly' combines two related limb differences: polydactyly, which means having extra fingers or toes, and syndactyly, which means having fingers or toes that are fused or webbed together. When described as 'bilateral,' it means both the left and right sides are affected. This entry in the Orphanet rare disease database is now marked as OBSOLETE, meaning it has been retired as a standalone classification. This is likely because bilateral polysyndactyly is now recognized as a feature that can appear in many different genetic syndromes rather than being considered a single distinct condition on its own. Polysyndactyly can occur as an isolated limb difference or as part of broader genetic syndromes such as Greig cephalopolysyndactyly syndrome, Bardet-Biedl syndrome, or various other conditions. Treatment typically involves surgical correction to separate fused digits and remove extra digits, usually performed in early childhood. The severity can range from mild webbing between fingers or toes with small extra digits to more complex structural differences that require multiple surgeries. Outcomes after surgery are generally good, especially when performed by experienced pediatric orthopedic or hand surgeons.
Also known as:
Key symptoms:
Extra fingers on one or both handsExtra toes on one or both feetWebbed or fused fingersWebbed or fused toesFingers or toes that appear wider than normalDifficulty gripping objects due to hand shapeDifficulty fitting into standard shoesAbnormal appearance of hands or feet on both sides of the bodyStiffness in affected fingers or toesReduced range of motion in affected digits
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 OBSOLETE: Polysyndactyly, bilateral.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Polysyndactyly, bilateral.
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 OBSOLETE: Polysyndactyly, bilateral.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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.Is my child's polysyndactyly isolated or could it be part of a genetic syndrome?,Should we pursue genetic testing, and what would the results mean for our family?,When is the best time to schedule surgery, and how many surgeries might be needed?,What are the risks and expected outcomes of surgery?,Will my child need occupational therapy or physical therapy after surgery?,Are there any activities my child should avoid before or after surgery?,What is the chance that future children could also have this condition?
Common questions about OBSOLETE: Polysyndactyly, bilateral
What is OBSOLETE: Polysyndactyly, bilateral?
Bilateral polysyndactyly is a congenital (present at birth) condition that affects the hands and/or feet on both sides of the body. The term 'polysyndactyly' combines two related limb differences: polydactyly, which means having extra fingers or toes, and syndactyly, which means having fingers or toes that are fused or webbed together. When described as 'bilateral,' it means both the left and right sides are affected. This entry in the Orphanet rare disease database is now marked as OBSOLETE, meaning it has been retired as a standalone classification. This is likely because bilateral polysynda
At what age does OBSOLETE: Polysyndactyly, bilateral typically begin?
Typical onset of OBSOLETE: Polysyndactyly, bilateral is neonatal. Age of onset can vary across affected individuals.