Living with Wooly hair-palmoplantar keratoderma syndrome
A very rare inherited skin and hair condition with woolly, thin hair and thick skin on the palms and soles.
Understanding Wooly hair-palmoplantar keratoderma syndrome
People have thin, woolly scalp hair and sparse body hair, eyelashes, and eyebrows. Palms and soles are thickened in a streaked pattern, worse on the soles, and it worsens with age. GARD notes the heart muscle problem seen in similar conditions is absent.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Sparse scalp hair
- Sparse eyebrows and eyelashes
- Sparse body hair
- Thick skin on palms and soles
- White discoloration of nails
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 KANK2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Foundation for Ichthyosis and Related Skin Types may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Foundation for Ichthyosis and Related Skin Types
- 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 Foundation for Ichthyosis and Related Skin Types 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
This condition is caused by changes in the KANK2 gene. A child inherits a changed copy of the gene from each parent (autosomal recessive).
Also known as: keratoderma with woolly hair type iv; keratoderma with wooly hair type iv; kwwh type iv; palmoplantar keratoderma and woolly hair; woolly hair-palmoplantar hyperkeratosis syndrome; woolly hair-palmoplantar keratoderma syndrome
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesWooly hair-palmoplantar keratoderma syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Wooly hair-palmoplantar keratoderma syndrome.
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