Living with Wooly hair nevus
A harmless patch of skin with overgrown skin cells, often with tightly curled hair, seen at birth or in early childhood.
Understanding Wooly hair nevus
Patches are seen at birth or develop in early childhood. They can be flat and tan, or raised and velvety, and may thicken, darken, and look wart-like. Sometimes people also have brain, eye, or bone problems, known as woolly hair nevus syndrome.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Raised, wart-like skin patch (epidermal nevus)
- Woolly scalp hair
- Curly, fine hair
- Patchy loss of hair color
- Hair loss at the back of the scalp
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in HRAS are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Nevus Outreach, Inc. and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Gene changes are present only in the cells of the nevus, not the normal skin around it. They may involve the FGFR3, PIK3CA, or HRAS genes.
Also known as: nevus, woolly hair, somatic; woolly hair nevus
Patient organizations
- Nevus Outreach, Inc.Wooly hair nevus · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Wooly hair nevus.
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