Overview
Woolly hair is a rare condition where a person is born with tightly coiled or curly hair that does not match the expected hair texture for their ethnic background. It is also sometimes called hereditary woolly hair or familial woolly hair. The hair is usually very tightly curled from birth and affects the entire scalp, though in some forms only patches of hair are involved. The condition is caused by changes in genes that control how hair follicles grow and shape the hair strand. Woolly hair can appear on its own as an isolated finding, meaning it does not cause any other health problems. However, in some cases it is part of a broader syndrome that can affect the heart, skin, or other organs. For example, woolly hair is a known feature of Naxos disease and Carvajal syndrome, which also involve heart muscle problems and thickened skin on the palms and soles. When woolly hair occurs on its own, it does not usually cause serious health problems, and life expectancy is normal. The main concerns are cosmetic and psychological. There is no cure or specific medical treatment for isolated woolly hair, but when it is part of a syndrome, treating the associated conditions — especially heart problems — becomes very important. Genetic counseling is recommended for affected families.
Also known as:
Key symptoms:
Tightly coiled or curly hair present from birthHair texture that does not match family or ethnic backgroundHair that affects the whole scalp (diffuse form) or only patches (localized form)Hair that may be dry or fragileIn syndromic forms: thickened skin on palms and soles (palmoplantar keratoderma)In syndromic forms: heart muscle disease (cardiomyopathy)In syndromic forms: irregular heartbeat (arrhythmia)In syndromic forms: swelling in the legs or shortness of breath due to heart problems
Clinical phenotype terms (12)— hover any for plain English
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 Woolly hair.
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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.
Community
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Caregiver Resources
NORD Caregiver Resources
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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.Is my woolly hair an isolated condition, or could it be part of a syndrome affecting my heart or skin?,Should I have heart tests done, and how often should I be monitored?,Which gene is most likely responsible in my family, and what genetic testing do you recommend?,What are the chances that my children or siblings will be affected?,Are there any activity restrictions I should follow?,What signs or symptoms should prompt me to seek emergency care?,Are there any clinical trials or new treatments I should know about?
Common questions about Woolly hair
What is Woolly hair?
Woolly hair is a rare condition where a person is born with tightly coiled or curly hair that does not match the expected hair texture for their ethnic background. It is also sometimes called hereditary woolly hair or familial woolly hair. The hair is usually very tightly curled from birth and affects the entire scalp, though in some forms only patches of hair are involved. The condition is caused by changes in genes that control how hair follicles grow and shape the hair strand. Woolly hair can appear on its own as an isolated finding, meaning it does not cause any other health problems. How
At what age does Woolly hair typically begin?
Typical onset of Woolly hair is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Woolly hair?
15 specialists and care centers treating Woolly hair are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.