Living with Alopecia universalis onychodystrophy vitiligo
A rare syndrome with total hair loss, total loss of skin pigment (vitiligo), and nail changes.
Understanding Alopecia universalis onychodystrophy vitiligo
The nails show fine pitting, softness, and brittleness, and may split sideways. The vitiligo is a complete, rapid, even loss of skin color without a patchy stage. The whole skin looks light and translucent, and it burns easily in the sun.
Signs & symptoms
Symptoms vary. GARD's summary says they include:
- Total hair loss
- Total loss of skin pigment (vitiligo)
- Pitted, soft, or brittle nails
- Sun-sensitive skin that burns easily
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Alopecia Areata Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: National Alopecia Areata 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 National Alopecia Areata 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 doesn't describe a cause for this condition yet.
Patient organizations
- National Alopecia Areata FoundationAlopecia universalis onychodystrophy vitiligo · United States
You are more than your diagnosis
Perspectives from people navigating life with Alopecia universalis onychodystrophy vitiligo.
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