Living with Linear verrucous nevus syndrome
A rare skin condition with lines of rough, wart-like bumps that can also involve the brain, eyes, and bones.
Understanding Linear verrucous nevus syndrome
The bumps often join into plaques. The condition can also involve other body systems, mainly the brain, eyes, and skeleton. It most often shows at birth but can appear anytime in childhood, and rarely in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Lines of wart-like bumps (verrucous papules)
- Thickened skin (hyperkeratosis)
- Seizures
- Larger than usual head (macrocephaly)
- Sparse scalp hair
- Brain tumors
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 cancer specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Foundation for Ichthyosis and Related Skin Types may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); 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
It is caused by genetic changes that happen after fertilization and are present only in some body cells (mosaic changes). GARD does not name a gene.
Also known as: linear hamartoma syndrome
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesLinear verrucous nevus syndrome · United States
- PTEN Hamartoma Tumor Syndrome FoundationLinear verrucous nevus syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Linear verrucous nevus syndrome.
Explore research for Linear verrucous nevus syndrome
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