Living with Alopecia totalis
A condition with complete loss of hair on the scalp, thought to be caused by the immune system attacking hair follicles.
Understanding Alopecia totalis
It 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 hair
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 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
National Alopecia Areata Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Skin, hair, and nail specialists (dermatologists)
- 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 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 is unknown, but it is thought to be autoimmune, with the immune system mistakenly attacking hair follicles. About 20% of affected people have a family member with alopecia, so genes may play a part.
Also known as: alopecia (capitis) totalis; total alopecia; total alopecia areata
Patient organizations
- National Alopecia Areata FoundationAlopecia totalis · United States
- Children's Alopecia Project, Inc.Alopecia totalis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Alopecia totalis.
Explore research for Alopecia totalis
Explore actively recruiting Alopecia totalis studies with HealthSpark.
Find actively recruiting studies for Alopecia totalis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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