Overview
Macrodactyly of toes, bilateral, is a rare congenital condition in which one or more toes on both feet are abnormally enlarged from birth. The term 'macrodactyly' literally means 'large digit.' In this condition, the bones, fat, skin, nerves, and other soft tissues of the affected toes grow more than normal, leading to toes that are noticeably bigger than the others. This overgrowth can affect one toe or several toes on each foot. The condition is usually present at birth and may become more obvious as the child grows. The enlarged toes can cause difficulty fitting into shoes, problems with walking and balance, and sometimes pain or discomfort. In some cases, the overgrowth continues throughout childhood (called progressive macrodactyly), while in others the enlarged toes grow at the same rate as the rest of the body (called static macrodactyly). Treatment is primarily surgical and depends on the severity of the overgrowth. Options include debulking surgery to reduce the size of the affected toes, epiphysiodesis (a procedure to stop further bone growth in the affected toes), or in severe cases, amputation of the affected digit. There is no medication that can reverse or stop the overgrowth. Early evaluation by a specialist is important to plan the best approach for each child. The condition is not life-threatening, but it can significantly affect foot function and quality of life if left untreated.
Also known as:
Key symptoms:
One or more toes on both feet that are noticeably larger than normalEnlarged bones in the affected toesExcess fat and soft tissue in the affected toesDifficulty fitting into shoesProblems with walking or balanceFoot pain or discomfortUneven toe length causing awkward gaitThickened skin on the affected toesStiffness in the affected toesCosmetic concerns about the appearance of the feet
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 toes, bilateral.
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Specialists
View all specialists →No specialists are currently listed for Macrodactyly of toes, 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 Macrodactyly of toes, bilateral.
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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 progressive type or the static type?,Should we do genetic testing to check for an underlying syndrome?,What surgical options are best for my child's specific situation?,How many surgeries might be needed as my child grows?,Are there any non-surgical treatments or clinical trials available?,What kind of shoes or orthotics would you recommend?,How will this condition affect my child's ability to walk and play sports long-term?
Common questions about Macrodactyly of toes, bilateral
What is Macrodactyly of toes, bilateral?
Macrodactyly of toes, bilateral, is a rare congenital condition in which one or more toes on both feet are abnormally enlarged from birth. The term 'macrodactyly' literally means 'large digit.' In this condition, the bones, fat, skin, nerves, and other soft tissues of the affected toes grow more than normal, leading to toes that are noticeably bigger than the others. This overgrowth can affect one toe or several toes on each foot. The condition is usually present at birth and may become more obvious as the child grows. The enlarged toes can cause difficulty fitting into shoes, problems with w
How is Macrodactyly of toes, bilateral inherited?
Macrodactyly of toes, bilateral follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Macrodactyly of toes, bilateral typically begin?
Typical onset of Macrodactyly of toes, bilateral is neonatal. Age of onset can vary across affected individuals.