Living with Epidermodysplasia verruciformis
A rare inherited skin condition with ongoing HPV infection, many skin lesions, and a high risk of some skin cancers.
Understanding Epidermodysplasia verruciformis
The infection leads to many different kinds of skin lesions. GARD says people with EV have a high risk of non-melanoma skin cancer. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Warts (verrucae)
- Small raised bumps (papules)
- Flat patches of lighter skin
- Raised scaly patches (plaques)
- Recurrent skin infections
- Café-au-lait spots
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 allergy and immune system specialists, 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
Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Cancer specialists (oncologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Immune Deficiency Foundation
- 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 HPV Alliance 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. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: lewandowsky-lutz disease; lewandowsky-lutz dysplasia; lewandowsky-lutz syndrome; lutz-lewandowsky epidermodysplasia verruciformis
Patient organizations
- HPV AllianceEpidermodysplasia verruciformis · United States
- Immune Deficiency FoundationPrimary immunodeficiency · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Epidermodysplasia verruciformis.
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