Overview
Woolly hair-palmoplantar keratoderma syndrome is a rare inherited skin condition that affects two main parts of the body: the hair and the skin on the palms of the hands and soles of the feet. People with this condition are born with tightly curled or kinked hair — even in individuals from ethnic backgrounds where straight hair is typical — and develop thickened, rough skin on their palms and soles, a condition called palmoplantar keratoderma. This thickening usually appears in early childhood and can become uncomfortable over time. The syndrome is caused by changes (mutations) in genes that are important for the structure of hair follicles and skin cells. The most well-known gene involved is KANK2, though other genes may also play a role. The condition is generally not life-threatening, but it can significantly affect quality of life, causing discomfort when walking, difficulty with hand tasks, and concerns about appearance. There is currently no cure for woolly hair-palmoplantar keratoderma syndrome. Treatment focuses on managing symptoms — mainly softening and reducing the thickened skin using moisturizers, keratolytic creams, and other topical therapies. Regular follow-up with a dermatologist is important to keep symptoms under control and monitor for any changes.
Also known as:
Key symptoms:
Tightly curled or kinked hair from birth, even in people who would not normally have curly hairThickened, rough skin on the palms of the handsThickened, rough skin on the soles of the feetSkin thickening that may cause pain or discomfort when walkingDifficulty gripping objects due to thickened palm skinSkin that may crack or peel on the hands and feetPossible nail changes in some individualsSkin symptoms that may worsen with friction or pressure
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Woolly hair-palmoplantar keratoderma syndrome.
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Specialists
View all specialists →No specialists are currently listed for Woolly hair-palmoplantar keratoderma syndrome.
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 Woolly hair-palmoplantar keratoderma syndrome.
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 gene is causing this condition in my family, and should other family members be tested?,What is the best daily skin care routine for managing the thickened skin on my hands and feet?,Are there any prescription creams or treatments that would work better than over-the-counter products?,How often should I see a dermatologist or podiatrist for follow-up care?,Are there any clinical trials or new treatments being studied for this condition?,What signs of skin infection should I watch for, and when should I seek medical attention?,Are there support groups or patient communities for people with this condition?
Common questions about Woolly hair-palmoplantar keratoderma syndrome
What is Woolly hair-palmoplantar keratoderma syndrome?
Woolly hair-palmoplantar keratoderma syndrome is a rare inherited skin condition that affects two main parts of the body: the hair and the skin on the palms of the hands and soles of the feet. People with this condition are born with tightly curled or kinked hair — even in individuals from ethnic backgrounds where straight hair is typical — and develop thickened, rough skin on their palms and soles, a condition called palmoplantar keratoderma. This thickening usually appears in early childhood and can become uncomfortable over time. The syndrome is caused by changes (mutations) in genes that
How is Woolly hair-palmoplantar keratoderma syndrome inherited?
Woolly hair-palmoplantar keratoderma syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Woolly hair-palmoplantar keratoderma syndrome typically begin?
Typical onset of Woolly hair-palmoplantar keratoderma syndrome is neonatal. Age of onset can vary across affected individuals.