OBSOLETE: Congenital absence/hypoplasia of thumb, unilateral

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ORPHA:295110
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Overview

Congenital absence or hypoplasia (underdevelopment) of the thumb on one side of the body is a condition present at birth where one thumb is either completely missing or significantly smaller and less developed than normal. This condition affects only one hand, while the other thumb develops normally. The thumb is essential for gripping, pinching, and many fine motor tasks, so having one thumb absent or underdeveloped can affect a child's ability to perform everyday activities like holding objects, writing, buttoning clothes, and feeding themselves. However, because only one hand is affected, many children adapt remarkably well over time. This entry in Orphanet is marked as 'OBSOLETE,' meaning it has been retired or reclassified in the rare disease classification system. Thumb absence or hypoplasia can occur as an isolated finding or as part of broader syndromes such as Holt-Oram syndrome, VACTERL association, Fanconi anemia, or thrombocytopenia-absent radius (TAR) syndrome. When a child is born with a missing or small thumb, doctors will typically evaluate for these associated conditions. Treatment options include surgical reconstruction (pollicization, where the index finger is repositioned to function as a thumb), prosthetics, and occupational therapy to maximize hand function. The approach depends on the severity of the thumb involvement and whether other medical conditions are present.

Also known as:

Key symptoms:

Missing thumb on one hand at birthSmall or underdeveloped thumb on one handDifficulty gripping or grasping objects with the affected handWeak pinch strength on the affected sideTrouble with fine motor tasks like writing or buttoningShortened or absent thumb bones visible on X-rayPossible underdevelopment of muscles at the base of the thumbReduced range of motion in the affected thumb if partially presentPossible instability of the thumb joint if partially formed

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 OBSOLETE: Congenital absence/hypoplasia of thumb, unilateral.

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No actively recruiting trials found for OBSOLETE: Congenital absence/hypoplasia of thumb, unilateral at this time.

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No specialists are currently listed for OBSOLETE: Congenital absence/hypoplasia of thumb, unilateral.

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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 OBSOLETE: Congenital absence/hypoplasia of thumb, unilateral.

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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 is the severity classification of my child's thumb involvement?,Has my child been screened for associated conditions like Fanconi anemia or heart problems?,Is pollicization surgery recommended, and at what age should it be done?,What outcomes can we expect from surgery in terms of hand function?,Should we pursue genetic testing to look for an underlying cause?,When should occupational therapy begin, and how often will sessions be needed?,Are there any adaptive devices that can help my child in the meantime?

Common questions about OBSOLETE: Congenital absence/hypoplasia of thumb, unilateral

What is OBSOLETE: Congenital absence/hypoplasia of thumb, unilateral?

Congenital absence or hypoplasia (underdevelopment) of the thumb on one side of the body is a condition present at birth where one thumb is either completely missing or significantly smaller and less developed than normal. This condition affects only one hand, while the other thumb develops normally. The thumb is essential for gripping, pinching, and many fine motor tasks, so having one thumb absent or underdeveloped can affect a child's ability to perform everyday activities like holding objects, writing, buttoning clothes, and feeding themselves. However, because only one hand is affected, m

At what age does OBSOLETE: Congenital absence/hypoplasia of thumb, unilateral typically begin?

Typical onset of OBSOLETE: Congenital absence/hypoplasia of thumb, unilateral is neonatal. Age of onset can vary across affected individuals.