Last December, U.S. Representative Ayanna Pressley, a Democrat from Massachusetts, cast her vote on Donald Trump’s impeachment and then went to hide in a bathroom stall. She didn’t hide because she was conflicted about her vote. Pressley says anguish consumed her because she had just lost all of her hair due to an autoimmune condition: Alopecia areata. The night before, she saw her final patch of hair fall out, leaving her completely bald. Worried that her bald head might be criticized by some as a political statement, she instead chose to wear a custom wig.
But she was questioning her decision. “I felt naked, exposed, vulnerable,” Pressley told the Root in an interview in January. She worried she was participating in cultural betrayal, she says, because of all the young girls who looked up to her because of her braids. “I felt like I owed those little girls an explanation,” she says.
Explain she did, in a video posted to the Root where she revealed her fully bald head. “I want to be freed from the secret and the shame that that secret carries with it,” she says. “It’s about self-agency. It’s about power. It’s about acceptance.” It’s a decision that she has no regrets about today. “When I went public with my alopecia diagnosis, I did so not to take up space, but to create space for others who have been struggling with their own relationship with their hair,” says Pressley. By speaking out, she hopes to raise awareness and destigmatize this common—but sometimes emotionally devastating—disease.
Alopecia areata is fairly common in the U.S.
Alopecia areata is not uncommon. The autoimmune skin disease affects 6.8 million Americans, or roughly one in 50 people, according to the National Alopecia Areata Foundation. It’s caused by inflammatory immune molecules in both the scalp and the blood that lead the body to attack its own hair follicles, explains Emma Guttman-Yassky, MD, PhD, vice-chair of the department of medicine at the Ichan School of Medicine at Mount Sinai Hospital in New York City. About 20 percent of people with alopecia have a family member with the disease. Its incidence increases among people who have eczema or asthma, adds Dr. Guttman-Yassky. While the condition can happen to anyone, at any age, African Americans are almost twice as likely to develop it as whites, according to a 2019 study published in the Journal of the American Academy of Dermatology.
Symptoms are obvious
In most cases, a dermatologist can make a diagnosis of alopecia areata simply through a physical exam, without relying on more invasive tests like biopsies, says Melissa Piliang, MD, a dermatologist at the Cleveland Clinic in Cleveland, Ohio. Typically, most people, like Pressley, notice smooth, round patches of hair loss that develop over weeks to months. In Pressley’s case, she was made aware when she was getting her signature Senegalese twists retwisted. From there, it accelerated quickly. “I had been waking up every morning to sinkfuls of hair, and every night I was employing all the tools I had been schooled and training in throughout my life as a black woman because I thought I could stop it,” she says. Despite wrapping her hair, wearing a bonnet, and sleeping on a silk pillowcase, her hair loss accelerated. People with alopecia may also develop pitted fingernails or toenails.
There are treatment options
The first-line therapy for alopecia areata is usually corticosteroids, either given as a topical cream or as an injection, says Dr. Piliang. But these are most effective for people with less severe alopecia, who have lost less than a quarter of their scalp hair. Now, many dermatologists use Xeljanz (tofacitinib), a drug of the Janus kinase (JAK) inhibitor class, to treat people with more extensive alopecia. This drug isn’t approved by the Food and Drug Administration for alopecia, so it’s being used off label (or for an unapproved use), explains Dr. Piliang. However, research suggests it can be effective.
In a 2017 study, published in the Journal of the American Academy of Dermatology, researchers found people who took tofacitinib for at least four months responded well to treatment. Approximately 60 percent of individuals saw over a 50 percent improvement in hair regrowth over a period of four to 18 months. (Note: One researcher reported serving on the advisory board or being a consultant to several pharmaceutical companies, including the manufacturer of the drug.)
Dr. Pilang cautions that the treatment only works as long as you do it. Patients’ hair usually starts to fall out again if the medication is stopped. The drug also carries a boxed warning (the strongest type), which was added by the Food and Drug Administration in 2019 because at high doses it can cause potentially life-threatening blood clots. More common are side effects like upper respiratory tract infections, headache, and diarrhea.
AlexPapp/Getty ImagesLifestyle factors probably play a small role
There is some evidence that certain nutrients may raise your risk of developing alopecia areata: vitamin D, zinc, and folate levels tend to be lower in people with the disease compared to people without it, according to a 2017 review published in the American Journal of Clinical Dermatology. But there’s not enough research to suggest that increasing your intake or taking supplements makes any difference, stresses Dr. Piliang. She instead recommends her patients follow an anti-inflammatory diet such as the Mediterranean diet, which may help reduce some of the inflammation in hair follicles associated with the disease.
While many dermatologists still believe stress plays a role in triggering a flare of alopecia areata, there’s no good research that day to day anxiety really makes a difference, according to a 2018 review published in the International Journal of Trichology. You, may, however, notice a flare-up after a condition that causes major physical stress, such as getting over a virus like mononucleosis or the flu, says Dr. Piliang.
(Check out these 9 ways to stop hair loss in men.)
You’re at risk of developing several other conditions
People with alopecia areata are more likely to develop other autoimmune diseases such as a thyroid disorder; allergic conditions such as hay fever, asthma, or eczema; and depression and anxiety. “We also see it in people who have a family history of other autoimmune diseases such as type 1 diabetes or rheumatoid arthritis, which suggests that there’s some common genetic link uniting all these conditions,” explains Dr. Piliang.
Due to the higher risk, it’s a good idea for your doctor to screen you for thyroid abnormalities every year, even if you’re not showing overt symptoms of thyroid trouble. Depending on which medications you take to treat the condition, you may also require blood tests every six to twelve months to check your white blood cell counts and make sure you don’t develop anemia. It’s also important to monitor yourself for signs of depression. (You can take a depression screening online.)
Cecilie_Arcurs/Getty ImagesIt can be a devastating diagnosis
About half of people with alopecia areata find that their hair grows back within a year. But, most of them will go through relapses, says Dr. Piliang. The disease is unpredictable, and “since hair reflects an important image of our body, losing it is highly affecting,” adds Dr. Guttman-Yasky. Almost eighty percent of adults diagnosed with alopecia areata report it significantly affects their quality of life, due to feelings of embarrassment and self-consciousness that can impact social and leisure activities, according to a 2018 paper published in the Journal of the American Academy of Dermatology.
That’s why it’s so important that public figures like Pressley speak out to destigmatize the disease and raise awareness, says Dr. Guttman-Yasky. Pressley, who says the outpouring of love and support she received from across the globe was overwhelming, agrees. “I truly believe that my reveal has brought light to this condition and served as a reminder to my bald squad that we are beautiful just the way we are,” she says.