Living with Epidermolytic nevus
A rare skin condition with wart-like patches that follow a pattern on the skin, often seen from birth.
Understanding Epidermolytic nevus
The patches are often present from birth and follow lines called Blaschko lines on the skin. They can appear at any time in life. Only the skin is affected. GARD notes that people with this condition may be at risk of having a child with bullous ichthyosiform erythroderma, a related skin condition.
Signs & symptoms
GARD describes this feature in its summary:
- One or several wart-like skin patches
- Patches that follow lines on the skin
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, genetic 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); 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 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
Changes in genes cause this condition. GARD does not name a specific gene.
Also known as: epidermal nevus with epidermolytic hyperkeratosis; epidermolytic epidermal nevus; epidermolytic verrucous epidermal nevus
Patient organizations
- Nevus Outreach, Inc.Epidermolytic nevus · United States
- Foundation for Ichthyosis and Related Skin TypesIchthyosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Epidermolytic nevus.
Explore research for Epidermolytic nevus
Explore actively recruiting Epidermolytic nevus studies with HealthSpark.
Find actively recruiting studies for Epidermolytic nevus with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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