Living with White sponge nevus
A harmless condition that causes white, thickened, velvety patches, most often inside the mouth.
Understanding White sponge nevus
The patches usually appear on the inside of the cheeks. Rarely they occur on the lining of the nose, esophagus, genitals, or anus. They come from a noncancerous overgrowth of cells. They can be present from birth but usually first appear in early childhood. They are generally painless, but the extra folds can encourage bacteria and infection.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these:
- White, thick, velvety patches
- Patches inside the cheeks
- Patches that may change in size and place
- Discomfort if the tissue becomes infected
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.
Care & treatment
- Care team
- Cancer specialists (oncologists); 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 Children's Skin Disease Foundation
- 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
GARD says changes in genes (variants) cause this condition. It is autosomal dominant, so a changed copy from one parent can be enough.
Also known as: familial white folded mucosal dysplasia; hereditary leukokeratosis of mucosa; hereditary mucosal leukokeratosis; hereditary oral keratosis; hereditary white sponge nevus; white sponge nevus of cannon
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with White sponge nevus.
Explore research for White sponge nevus
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- Eligibility is confirmed by the study team
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