Overview
Macrodactyly of fingers, unilateral, is a rare congenital condition where one or more fingers on one hand are abnormally large from birth. The word 'macrodactyly' literally means 'large digit.' In this condition, the bones, fat, skin, nerves, and other soft tissues of the affected fingers grow more than normal, but only on one side of the body (unilateral). This is not a cancerous growth — it is an overgrowth of normal tissues that happens during development before birth and may continue during childhood. The condition is usually noticed right at birth because the affected fingers appear noticeably larger than the others. The enlarged fingers can make it difficult to grip objects, and the hand may look different from the other hand. In some cases, the overgrowth is progressive, meaning the fingers continue to grow faster than normal throughout childhood. In other cases, the enlarged fingers grow at the same rate as the rest of the body (static type) but remain proportionally larger. Treatment is primarily surgical. Options include debulking surgery to reduce the size of the affected fingers, epiphysiodesis (a procedure to stop bone growth in the enlarged fingers), and in severe cases, amputation of the affected digit. The goal of treatment is to improve hand function and appearance. There is no medication that can treat macrodactyly. Early evaluation by a hand surgeon experienced with this condition is important to plan the best approach for each child.
Also known as:
Key symptoms:
One or more fingers on one hand that are much larger than normal from birthEnlarged bones in the affected fingersExcess fat tissue in the affected fingersThickened skin on the enlarged fingersStiffness in the affected fingersDifficulty bending or straightening the enlarged fingersTrouble gripping or holding objectsUneven hand appearance compared to the other handPossible nerve enlargement in the affected areaProgressive increase in finger size during childhood in some cases
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Macrodactyly of fingers, unilateral.
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Specialists
View all specialists →No specialists are currently listed for Macrodactyly of fingers, unilateral.
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 Macrodactyly of fingers, unilateral.
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Caregiver Resources
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Social Security Disability
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Questions for your doctor
Bring these to your next appointment
- Q1.Is my child's macrodactyly the static type or the progressive type, and what does that mean for treatment?,Should we do genetic testing to check for a PIK3CA mutation or a related overgrowth syndrome?,What surgical options are recommended for my child, and how many procedures might be needed?,What are the risks and expected outcomes of surgery?,When is the best time to start treatment?,Will my child need occupational therapy, and for how long?,Are there any clinical trials or new treatments, such as PIK3CA inhibitors, that might be appropriate for my child?
Common questions about Macrodactyly of fingers, unilateral
What is Macrodactyly of fingers, unilateral?
Macrodactyly of fingers, unilateral, is a rare congenital condition where one or more fingers on one hand are abnormally large from birth. The word 'macrodactyly' literally means 'large digit.' In this condition, the bones, fat, skin, nerves, and other soft tissues of the affected fingers grow more than normal, but only on one side of the body (unilateral). This is not a cancerous growth — it is an overgrowth of normal tissues that happens during development before birth and may continue during childhood. The condition is usually noticed right at birth because the affected fingers appear noti
How is Macrodactyly of fingers, unilateral inherited?
Macrodactyly of fingers, unilateral follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Macrodactyly of fingers, unilateral typically begin?
Typical onset of Macrodactyly of fingers, unilateral is neonatal. Age of onset can vary across affected individuals.