An unpredictable disease – that is how Dr. Enilde Borges Costa, a dermatologist with the Brazilian Society of Dermatology (SBD), defines alopecia areata. During the month dedicated to this disease – which affects about two percent of the world’s population, according to SBD – Agência Brasil shares stories of patients living with hair loss.

Alopecia areata is an autoimmune disease characterized by the body’s attack on the hair follicle, causing episodes of hair loss that can occur at any stage of life. It often occurs in cycles – hair growth in the affected area is followed by a new episode of hair loss.

“The body itself, due to various circumstances, attacks the hair follicle and prevents a healthy strand that can remain in place from forming,” Dr. Costa said.

According to the doctor, the condition can manifest in three ways:

• hair loss in small areas of the scalp;
• alopecia areata totalis, when hair falls out across the entire scalp;
• alopecia areata universalis, when a person loses all body hair.

The diagnosis is made in the doctor’s office itself, through a clinical examination of the hairless areas. According to the dermatologist, there is currently no laboratory or imaging test that can aid in the diagnosis.

Since the condition does not cause any lesions, scars, or wounds on the scalp, the only noticeable sign is the absence of hair in a given area. Dr. Costa explains that pulling on a small strand of hair and noticing that it comes out easily is sometimes a simple test that helps the dermatologist confirm the diagnosis, as is observing the absence of hair in the beard, eyelashes, and eyebrows.

Emotional issues

Closely linked to emotional issues, alopecia has a genetic component. Some say that the condition can be triggered by an infection, for example, which affects the immune system, or by another autoimmune disease.

“Generally speaking, it is not a psychosomatic disorder. But it can be cyclical, occurring in episodes. And these episodes can be triggered by various things, including an intense stressful situation. But there are other triggering factors,” she went on to say.

The dermatologist warns that focusing solely on emotional factors as a cause often leads to feelings of guilt in the patient, who begins to feel responsible for the flare-ups.

Book editor Beatriz Santos, who has lived with alopecia since 2008 and runs the @debemcomaalopecia Instagram account, says that the first doctors she saw insisted that her hair loss was related to something emotional. She had recently turned 15, was finishing high school, and was told her hair loss was likely due to excessive anxiety about her college entrance exams.

“The first thing they’d ask me when I walked into the office was, ‘So what happened?’ And I couldn’t think of anything. It was funny and uncomfortable,” she recalls. “If [stress] were the cause, we’d leave the stressful environment and our hair would grow back. But that’s not how it works.”

Treatment

Beatriz first noticed her hair loss at a beauty salon, where she went to have her hair styled for a cousin’s wedding. With her curly, voluminous hair, she had not noticed an eight-centimeter-wide patch of baldness near the nape of her neck. From that point on, she says she went through an ordeal trying to find a doctor who understood her condition.

She recalls undergoing several treatments with oral corticosteroids and injections directly into the scalp. The corticosteroid used was not the most appropriate and caused side effects. In addition, the injections were painful.

At Dr. Costa’s office, a more appropriate corticosteroid was prescribed, along with ointments and creams, and her hair began to grow back in some areas.

After a year of this new treatment, however, Beatriz underwent a bone density test, which is required for treatments involving this type of medication. The test revealed that the young woman, who was only 17 at the time, had osteopenia, a condition characterized by gradual bone loss.

“I went to see a rheumatologist, and he really scared me. He told me to think it over carefully, because if I kept taking corticosteroids, I’d be in a wheelchair by the time I was 45. I remember leaving there in tears; I spent about three days thinking it over and decided I was going to stop treatment,” she recounted.

The dermatologist says that corticosteroids can be administered in various ways, either by injection or orally. However, if used for a long time, they can result in side effects, such as loss of bone density, which is why patients undergo frequent lab tests.

In 2012, four years after the first episode, Beatriz lost all her hair, including hair from other parts of her body. Since then, she has been living with alopecia areata universalis.

She has adapted to living with the condition over the years. She learned to use makeup to draw her eyebrows, for example. She has also worn a wig, but it did not suit her. These days, the book editor does nothing to hide or disguise her hair loss. And, with the help of psychological therapy, she is at peace with her condition.

“What I think happened to me – and what I think happens to most people who manage to cope well – is that life expands in other directions. So alopecia isn’t the main thing; it isn’t the center of attention. You don’t spend the day thinking about it; you’re not constantly worried about whether people are staring. How do you do that? By pursuing other interests – reading books, going to the movies, talking with people – and creating a richer, more fulfilling life in other areas.”

Emotional support

To help welcome patients who initially try to hide their condition, Dr. Costa created the Alopecia Areata Support Group (AAGAP in the original Portuguese acronym), which meets once a month in São Paulo and maintains an active space for listening and exchanging information via WhatsApp.

Beatriz used to attend the group with her parents and has a special fondness for it. So does Juliana Fernandes, who attended the second meeting 23 years ago and now helps welcome patients and manage the group.

Juliana, who is 45 and works in real estate, had her first episode of alopecia when she was 10. Her mother noticed the patch of baldness while combing her hair. She began seeing a dermatologist, and with treatment, her hair started growing back. This continued until she was 17, when the medications stopped working.

When she got her first job, which came with health insurance, she was advised to seek a second opinion. And at that doctor’s office, she was told that her hair might never grow back.

“From the very beginning, in my mind and in my mother’s mind, it was a one-time thing – a flaw that goes away once you take the medicine. No one ever explained to us that it was an autoimmune disease, a genetic condition, or any of the specifics. We didn’t have the internet to ‘google it’ and find out what it was.”

Even after gaining a better understanding of the condition, Juliana says she spent her entire paycheck on medications that did not work. Since wigs and scarves were not her style, she decided to face the situation without hiding her condition. With the help of a support group and a therapist, she learned to cope with and accept her own difference.

“I went through four years of continuous, weekly therapy. And that helped me a lot – it brought me back to life. I like to joke that my mom gave birth to me once, and my therapist gave birth to me a second time. I realized I’d never had self-esteem, even when I had hair. I’ve learned to cope with and accept my difference. I look in the mirror and see myself as normal. I’ve spent more than half my life without hair – it’s natural.”

Embracing difference

Juliana says that new patients join the support group practically every day. Family members also seek out the network, especially mothers – such as Regina Ramos, a psychologist and mother of a teenage boy who experienced his first episode of hair loss at age eight. His condition soon progressed to alopecia totalis, and by the end of that first episode, he was completely bald. Since then, no treatment has been effective.

The family follows research on the condition but weighs the side effects, especially since he is still a young man. So far, their choice has been to prioritize his health and address the emotional impacts of hair loss.

“The best treatment – and perhaps the one most feasible for us – was to really work on his self-esteem and self-image, because that’s something I’m familiar with and know we can achieve. I hoped to be able to help him in that regard,” she said.

Helping her son become stronger is also the goal of Paloma Monteiro da Lava, mother of five-year-old Levi. Like Regina’s son, Levi had an episode that soon progressed to alopecia areata universalis.

The hair loss began after an episode of high fever that lasted two days. He was diagnosed in May 2025, and Levi is now on his third course of treatment, under the close supervision of a dermatologist. So far, he has not experienced any side effects, and the family has decided that if the medication affects the little boy’s health, the treatment will be suspended.

Paloma says her son has always coped with the condition better than she has, especially given his age. She therefore decided to become his spokesperson, talking about alopecia and raising awareness on social media and in her community, which is located in Paraná state, in South Brazil. At the same time, she works to build her son’s self-esteem and emotional resilience.

“I’ve realized over time that people with alopecia tend to hide themselves away. I don’t want him to do that, so I try to encourage him to accept himself just the way he is and teach him he can do everything everyone else does – just in a slightly adapted way.”

Among the adjustments to his routine, Paloma says that Levi always carries a cap in his backpack, along with sunglasses and a cloth diaper, to keep sweat from getting into his eyes. In everyday life, children his own age do not treat Levi any differently. Among older kids, however, she notices some resistance.

“That’s why I like to say on my social media that we, as parents, need to talk to our children about how there are people who are different – with different skin colors and different hair.”

That does not mean there are no challenges. Paloma says that the loneliness that comes with the diagnosis affects her too, and she asks herself: “I need to prepare my son for everything, but who prepares me?”

“Just this week, I’ve been talking to the school principal to make sure we don’t have a ‘crazy hair day.’ We had a bad experience last year – he cried a lot because his hair wasn’t like his female friends.’ It was a sensitive and sad time for us,” said Paloma, adding that the principal granted her request and other activities will be organized for the children.

From this whole experience, a campaign dubbed “There’s more to me than how I look” campaign was launched. On social media, Paloma shares information about the condition and organizes discussions and meetups to combat misinformation.

Through her online work, she has met other families and connected with other children who have alopecia – a way for her son to see himself reflected in others. The campaign is primarily for him.

“I have to help him be strong, make him understand that [not having hair] is a condition, and that just because he doesn’t have hair doesn’t mean he can’t do what others do,” she added.

Rights

Since 2022, Bill 801/2022 has been under consideration in the Brazilian lower house. It amends the Statute on Persons with Disabilities to include alopecia areata. The bill has been reviewed by the Committee on the Defense of Persons with Disabilities and is currently awaiting discussion in the lower house Health Committee.

The piece of legislation highlights the importance of providing legal protection for people, particularly given the emotional and psychological impacts of hair loss. Inclusion in the list of physical disabilities would bring benefits and rights, expanding the promotion of public policies for these people.

Despite this, Beatriz Santos and Juliana Fernandes oppose the passage of the law. They argue that alopecia does not prevent them from living a normal life.

“It’s an autoimmune disease. Is it a disability? I don’t see it that way. I can do everything. I go on dates, I hang out, I travel, and I work. For me, disability exists in society, not in us,” Juliana argued.

Beatriz says she was bothered by the proposal. “I don’t agree with the bill, even conceptually. Alopecia is an autoimmune disease that causes hair loss. It doesn’t cause pain; it doesn’t cause any physical symptoms. The only thing it changes is your appearance. But it doesn’t affect how your organs function, for example. Nothing,” she noted.

She also questions whether other autoimmune diseases would follow the same line of reasoning and points out the difficulty in establishing parameters for what might be a consequence of alopecia but not necessarily caused by it.

Psychologist Regina Ramos, on the other hand, advocates for expanding public healthcare policies. In São Paulo, for example, she cites a municipal law passed in 2025 that established a protocol for treating patients diagnosed with alopecia areata.

Among the bill’s guidelines are medical exams and referrals for free psychological counseling.

“The right to treatment and specialized care is wonderful. Medication is extremely expensive. So I think it’s essential that people have access to it,” she pointed out.

Paloma, Levi’s mother, believes the bill can raise awareness and bring more visibility to the condition. Furthermore, she believes the proposal can safeguard her son’s rights, especially in adulthood. “Down the road, a young man with alopecia universalis might not be able to get a job because of his appearance,” she argued.