Overview
Alopecia totalis (AT) is a condition where a person loses all the hair on their scalp. It is considered a more advanced form of alopecia areata, which usually causes patchy hair loss. When hair loss spreads to cover the entire scalp, it is called alopecia totalis. If hair loss also affects the rest of the body — including eyebrows, eyelashes, and body hair — it is called alopecia universalis. The condition happens because the immune system mistakenly attacks the hair follicles, the tiny structures in the skin that grow hair. This causes the follicles to stop producing hair, though they are not permanently destroyed. Alopecia totalis can affect people of any age, including children. The main symptom is complete loss of scalp hair, which can happen gradually or quite quickly. The scalp itself usually looks and feels normal — there is no scarring, pain, or itching in most cases. Some people also notice changes in their fingernails or toenails, such as pitting or ridging. There is no cure for alopecia totalis, but several treatments can help stimulate hair regrowth in some people. These include corticosteroids (given as injections, creams, or pills), topical immunotherapy, and newer medications called JAK inhibitors. Baricitinib (Olumiant) and ritlecitinib (Litfulo) are FDA-approved JAK inhibitors that have shown promising results for severe alopecia areata including alopecia totalis. Hair regrowth is possible but not guaranteed, and hair loss can return even after successful treatment. Emotional and psychological support is an important part of managing this condition.
Key symptoms:
Complete loss of all hair on the scalpSmooth, bare scalp with no visible hairLoss of eyebrows or eyelashes in some casesNail changes such as pitting, ridging, or brittlenessPatches of hair loss that spread and merge over timeNo pain, scarring, or significant itching on the scalp in most casesEmotional distress, anxiety, or low self-esteem related to hair lossSensitivity of the scalp to sun or cold due to lack of hair protection
Clinical phenotype terms (10)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
1 eventData sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Alopecia totalis.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Alopecia totalis.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What treatment options are available for my level of hair loss, and which do you recommend starting with?,Am I a candidate for JAK inhibitor therapy, and what are the risks and benefits for me specifically?,How long will it take to know if a treatment is working, and what should I do if it doesn't?,Should I be tested for other autoimmune conditions like thyroid disease?,What are the chances my hair will grow back, and could it fall out again even if it does?,Are there support groups or mental health resources you can recommend for people with alopecia totalis?,If I have children, what is the chance they could develop this condition?
Common questions about Alopecia totalis
What is Alopecia totalis?
Alopecia totalis (AT) is a condition where a person loses all the hair on their scalp. It is considered a more advanced form of alopecia areata, which usually causes patchy hair loss. When hair loss spreads to cover the entire scalp, it is called alopecia totalis. If hair loss also affects the rest of the body — including eyebrows, eyelashes, and body hair — it is called alopecia universalis. The condition happens because the immune system mistakenly attacks the hair follicles, the tiny structures in the skin that grow hair. This causes the follicles to stop producing hair, though they are not
How is Alopecia totalis inherited?
Alopecia totalis follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Alopecia totalis?
Yes — 1 recruiting clinical trial is currently listed for Alopecia totalis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Alopecia totalis?
25 specialists and care centers treating Alopecia totalis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.