Living with Leukonychia totalis-acanthosis-nigricans-like lesions-abnormal hair syndrome
A rare inherited condition with white nails, dark thick skin patches, and dry, brittle hair.
Understanding Leukonychia totalis-acanthosis-nigricans-like lesions-abnormal hair syndrome
People have completely white nails and patches of darkened, thickened skin on the neck, armpits, and belly area. The hair is dry and brittle, with twists and furrows. It begins in newborns and infants.
Signs & symptoms
GARD doesn't list a symptom list for this condition. Its summary describes these features:
- Completely white nails (leukonychia totalis)
- Dark, thick skin patches (acanthosis-nigricans-like)
- Dry, brittle hair
- Twisted hair with furrows
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- 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
It is inherited in an autosomal dominant way, which means one changed copy of a gene is enough. GARD does not name a gene.
Also known as: leukonychia totalis, acanthosis-nigricans-like lesions, abnormal hair syndrome
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 Leukonychia totalis-acanthosis-nigricans-like lesions-abnormal hair syndrome.
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