Non-syndromic preaxial polydactyly

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Overview

Non-syndromic preaxial polydactyly is a condition where a person is born with one or more extra fingers or toes on the thumb side (the 'preaxial' or inner side) of the hand or foot. 'Non-syndromic' means this extra digit occurs on its own, without other birth defects or health problems as part of a broader syndrome. The extra digit can range from a small, soft bump of skin and tissue to a fully formed, functional finger or toe with bones and joints. Both hands, both feet, or just one limb may be affected. This condition is also sometimes called preaxial polydactyly type I, II, III, or IV depending on which digit is duplicated — most commonly the thumb (called thumb duplication or bifid thumb) or the big toe. Most children with this condition are otherwise completely healthy. The main concern is physical function and appearance of the hand or foot. Surgery is the standard treatment and is usually recommended in early childhood to remove or reconstruct the extra digit, helping the child develop normal hand or foot function. With timely surgery and follow-up care, most children go on to live full, active lives with good use of their hands and feet.

Key symptoms:

Extra finger on the thumb side of the hand (thumb duplication or bifid thumb)Extra toe on the big toe side of the footThe extra digit may be small and underdeveloped, or fully formed with bonesThe extra digit may be floppy or stiffAbnormal shape or alignment of the thumb or big toeDifficulty gripping or pinching objects (if the thumb is affected)Uneven nail appearance on the duplicated digitPossible joint instability in the affected finger or toeVisible difference in the appearance of the hand or foot at birth

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Non-syndromic preaxial polydactyly.

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No actively recruiting trials found for Non-syndromic preaxial polydactyly at this time.

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No specialists are currently listed for Non-syndromic preaxial polydactyly.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Non-syndromic preaxial polydactyly.

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Community

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Caregiver Resources

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Questions for your doctor

Bring these to your next appointment

  • Q1.What type of preaxial polydactyly does my child have, and how complex is it?,What surgical approach do you recommend, and what are the risks and expected outcomes?,At what age should surgery be done, and why?,Will my child need more than one surgery?,What therapy will my child need after surgery, and for how long?,Should our family have genetic testing, and could this affect future pregnancies?,What long-term follow-up will my child need as they grow?

Common questions about Non-syndromic preaxial polydactyly

What is Non-syndromic preaxial polydactyly?

Non-syndromic preaxial polydactyly is a condition where a person is born with one or more extra fingers or toes on the thumb side (the 'preaxial' or inner side) of the hand or foot. 'Non-syndromic' means this extra digit occurs on its own, without other birth defects or health problems as part of a broader syndrome. The extra digit can range from a small, soft bump of skin and tissue to a fully formed, functional finger or toe with bones and joints. Both hands, both feet, or just one limb may be affected. This condition is also sometimes called preaxial polydactyly type I, II, III, or IV depen

At what age does Non-syndromic preaxial polydactyly typically begin?

Typical onset of Non-syndromic preaxial polydactyly is neonatal. Age of onset can vary across affected individuals.