Living with Alopecia universalis congenita
A condition with complete loss of hair on the scalp and body, which can be present from birth.
Understanding Alopecia universalis congenita
Alopecia universalis (AU) is an advanced form of alopecia areata, which causes round patches of hair loss. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Complete loss of scalp and body hair
- Missing eyebrows
- Missing eyelashes
- Patchy hair loss
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.
- 3Consider genetic testing
Changes in HR are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Autoimmune Association and National Alopecia Areata Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Autoimmune Association, 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 Autoimmune Association 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
GARD says the exact cause of AU is unknown, but it is thought to be autoimmune. It also lists the HR gene and autosomal recessive inheritance for this congenital form.
Also known as: alunc; atrichia, generalised; atrichia, generalized
Patient organizations
- Autoimmune AssociationAlopecia universalis congenita · United States
- National Alopecia Areata FoundationAlopecia universalis congenita · United States
- Children's Alopecia Project, Inc.Alopecia universalis congenita · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Alopecia universalis congenita.
Explore research for Alopecia universalis congenita
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