Overview
Ectrodactyly is a rare condition that affects the development of the hands and/or feet. The word 'ectrodactyly' comes from Greek words meaning 'missing fingers.' The most recognizable feature is a split or cleft in the middle of the hand or foot, which can make the hand look like a claw or lobster claw. Because of this appearance, the condition is sometimes called 'split hand/split foot malformation' (SHFM) or informally referred to as 'lobster claw hand.' Some people have only the hand or foot differences, while others may have additional features affecting the eyes, ears, skin, teeth, or urinary tract, depending on the specific form of the condition. Ectrodactyly can range from very mild — such as fused or missing fingers — to more significant differences in hand and foot structure. Some people have the condition in just one limb, while others are affected in all four. The condition is present from birth and is caused by changes in how the limbs develop during pregnancy. It can occur on its own or as part of a broader syndrome, such as EEC syndrome (ectrodactyly, ectodermal dysplasia, and clefting). Treatment focuses on improving hand and foot function through surgery, physical therapy, and assistive devices. Many people with ectrodactyly lead full, independent lives with appropriate support.
Key symptoms:
Split or cleft in the middle of the hand or foot (the most common feature)Missing fingers or toesFused fingers or toes (syndactyly)Abnormally short or absent bones in the hands or feetDifferences in only one limb or all four limbsCleft lip or cleft palate (in some syndromic forms)Hearing loss (in some syndromic forms)Vision problems or tear duct abnormalities (in some syndromic forms)Skin, hair, or nail differences (in ectodermal dysplasia-related forms)Dental abnormalities such as missing or malformed teeth (in some forms)Urinary tract differences (in some syndromic forms)
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 Ectrodactyly with and without other manifestations.
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Specialists
View all specialists →No specialists are currently listed for Ectrodactyly with and without other manifestations.
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 Ectrodactyly with and without other manifestations.
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.Which specific form of ectrodactyly does my child have, and is it part of a broader syndrome?,What genetic testing should we do, and what will the results tell us about other family members?,What surgeries might be recommended, and at what age should they happen?,What therapies will help my child develop the best possible hand and foot function?,Are there other body systems we should monitor, such as hearing, vision, or the urinary tract?,What are the chances that other children we have could be affected?,Are there patient support groups or resources you recommend for families dealing with this condition?
Common questions about Ectrodactyly with and without other manifestations
What is Ectrodactyly with and without other manifestations?
Ectrodactyly is a rare condition that affects the development of the hands and/or feet. The word 'ectrodactyly' comes from Greek words meaning 'missing fingers.' The most recognizable feature is a split or cleft in the middle of the hand or foot, which can make the hand look like a claw or lobster claw. Because of this appearance, the condition is sometimes called 'split hand/split foot malformation' (SHFM) or informally referred to as 'lobster claw hand.' Some people have only the hand or foot differences, while others may have additional features affecting the eyes, ears, skin, teeth, or uri
At what age does Ectrodactyly with and without other manifestations typically begin?
Typical onset of Ectrodactyly with and without other manifestations is neonatal. Age of onset can vary across affected individuals.