Alopecia Totalis: What You Need to Know

Alopecia totalis is a hair loss condition related to the alopecia areata, a more common autoimmune-related form of hair loss that affects almost 7 million Americans and impacts people of all ages and ethnicities.

This family of conditions can vary from person to person, making it unpredictable, and often hard to manage — both medically and personally. Keep reading to better understand the hair loss associated with alopecia totalis, how it’s diagnosed and treated, along with resources for people who are managing hair loss such as alopecia totalis.

What Is Alopecia Totalis?

Alopecia totalis (AT) is an autoimmune disease that causes complete hair loss on the entire scalp.

Alopecia totalis, and other forms of autoimmune hair loss, develop when the immune system attacks hair follicles. Our immune system routinely attacks foreign bodies like bacteria and viruses, but when things go awry, it attacks healthy and normal bodily tissue or organs, and with alopecia and other forms of autoimmune hair loss, the hair follicle is mistakenly attacked.

When this happens, it can result in a number of autoimmune conditions like rheumatoid arthritis, Hashimoto’s disease, lupus or any of the conditions related to alopecia areata.

“Alopecia totalis is a relatively rare condition, affecting only about 1 in every 5,000 people,” said Dr. Cheryl Rosen, a board-certified dermatologist and Director of Dermatology at BowTiedLife. 

The exact causes of alopecia totalis are not well understood, though evidence suggests that genetic factors and specific genes are involved. Those with family members who have or have had alopecia areata might be at a higher risk, and about 20% of patients with AT have a family history of alopecia areata. Evidence also suggests that environmental factors like severe illness, infection, drugs and stress may contribute to flares or relapse of AT.

While the most common symptom of AT is the sudden and complete (or near-complete) loss of hair, some people with the alopecia totalis might also notice soreness, itching, or tingling sensations on their scalp. Some people with AT also notice changes in their nails.

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Alopecia Totalis vs. Alopecia Areata

“Alopecia totalis is a severe presentation of alopecia areata,” explained Dr. Mary Ramirez, board-certified dermatologist with Westlake Dermatology.

Alopecia areata is a more common autoimmune hair loss condition. It involves round patches of hair loss that typically happen on the scalp, though the affected areas might include eyebrows or other parts of the body, too.

Aside from alopecia totalis, other conditions related to alopecia areata include:

• Persistent patchy alopecia areata: Patchy hair loss and bald spots that continue over time without developing into a more serious form of hair loss (like totalis or universalis, covered below).
• Diffuse alopecia areata: Widespread hair loss evenly throughout the scalp. This type is often mistaken for other hair loss conditions like telogen effluvium or androgenic alopecia.
• Ophiasis alopecia: A unique band-shaped pattern of hair loss that occurs on the sides and lower back of the scalp (called the occipital region).

• Alopecia universalis: Loss of hair on the entire body.

Not everyone with severe alopecia areata will go on to develop alopecia totalis, though this family of autoimmune conditions can be unpredictable and there is no way surefire way to prevent alopecia areata from worsening. About 5%-10% of patients with alopecia areata will develop alopecia totalis. 

AT can resolve, sometimes even years after its onset. It might also be permanent. However, due to the uncertainty of these conditions, there’s no way to know for sure. That being said, the chances of hair regrowth are higher the earlier you begin treatment.

Get The Full Picture: Alopecia Areata Explained

How Is Alopecia Totalis Diagnosed and Treated?

If you are noticing a sudden loss of hair, round bald patches or you're worried about developing alopecia totalis, see a doctor.

“Although typically a straightforward diagnosis, sometimes additional tests including trichoscopy (the use of a dermatoscope to look at scalp and hairs closely) and/or biopsy are needed to confirm the diagnosis,” said Dr. Ramirez. Blood tests might also be ordered to look for evidence of an autoimmune condition.

“There is no known cure for alopecia totalis, but there are treatments that can help slow or stop hair loss,” said Dr. Rosen. Treatments could include topical, injectable or oral corticosteroids, which can help suppress the immune system. Your doctor might also prescribe other topical immunotherapy medications designed to help stimulate hair growth.

“For those with extensive or resistant disease, the use of JAK inhibitors has been shown to be increasingly successful,” said Dr. Ilyas. Janus kinase inhibitors, or JAK inhibitors, are another class of medications that suppress the immune system and are used to treat inflammatory diseases like rheumatoid arthritis and psoriatic arthritis. Though more research is needed, initial evidence shows that JAK inhibitors might help alopecia patients regrow hair.

Sometimes, the immune system can stop attacking the hair follicles, and hair may start to grow again. This can happen for no apparent reason and often years after the first symptoms appear. However, the chances of alopecia areata resolving into full regrowth after it has progressed to AT are small.

Learn More: 7 Autoimmune Conditions That Can Impact Hair

Further Resources and Support for Alopecia Totalis

Managing alopecia totalis can be very challenging, scary and even isolating. For many, hair is a big part of our visual identities. Losing it can be devastating, which is why support becomes an important part of healing.

You might want to consider individual therapy to help navigate the complicated emotions that might have come along with a diagnosis of AT: grief, anxiety, sadness and depression — there is no wrong feeling. A qualified therapist can be a great resource.

“Lean on people for support,” alopecia advocate McKenna Reitz told VEGAMOUR. “As much as we feel that our hair is our identity, it is our character that defines us. However, it will take time to transform your mindset, and that is OK! Know you are not alone,” she said.

McKenna is a mother who developed alopecia areata shortly that quickly escalated to alopecia universalis, and McKenna lost all of her hair. Today McKenna is an advocate for the National Alopecia Areata Foundation, a nonprofit organization that offers a wide variety of resources to patients and families.

 

The Takeaway

Alopecia totalis is an autoimmune hair loss condition that results in total, or near-total, hair loss on the scalp. It often begins as a related form of hair loss called alopecia areata, which is recognizable as small patches of hair loss. Alopecia areata, alopecia totalis and other members in this family of hair loss are not well understood, and there is no cure for these autoimmune conditions.

If you think you might have alopecia areata or alopecia totalis, see a doctor. Starting treatment early offers a better chance of managing hair loss. Seeking support from family, friends, therapists and others with AT can also be a really valuable way of managing the condition.

More from VEGAMOUR:

• What Is Forest Bathing? How the Japanese Relieve Stress Outdoors
• Hair Loss and Thyroid Disorders: What You Need to Know
• Hair Story: My 25 Year On and Off Journey With Hair Loss
• Persistent Patchy Alopecia Areata: One Type of Hair Loss Explained

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