Alopecia Isn’t a ‘Cosmetic Issue’—It’s a Serious Autoimmune Disease

Jada Pinkett Smith revived the national conversation around alopecia after her husband’s actions at the 94th annual Oscar Awards ceremony in March of this year. Before the Oscars slap, however, Rep. Ayanna Pressley (D-Mass.), renowned for her Senagalese twists, released a video publicly revealing her shaved head. In the video, released in January 2020, she shared how her political identity was tied to her twists and what the loss of her hair meant not only to her personally, but also her brand.

And before Pressley, there were millions of women suffering in silence with a disease which medical professionals had long dismissed as “cosmetic.”

Alopecia, as defined by the National Alopecia Areata Foundation, is an autoimmune disease that develops when “the body’s immune system attacks its healthy hair follicles which causes hair loss on the scalp, face and sometimes on other areas of the body.” According to the American Hair Loss Association, about 40 percent of hair loss sufferers are women.

In a society with unrealistic beauty standards for women, not having hair, particularly long hair, can cause a woman to feel devastated, especially when it is not within her control. And while the 1920s flappers and 21st century feminism have allowed women to embrace shorter hair, the complete loss of hair causes psychological damage.

“To be bald as a woman really does disrupt conventional and societal norms of what is appropriate, what is professional, what is attractive, what is feminine,” said Pressley. “It takes a real toll.”

Last September, Pressley and her colleague in Congress, Rep. James McGovern (D-Mass.), reintroduced a bill “requiring Medicare to pay for wigs for those experiencing hair loss due to medical treatments or disease.” Currently, some private insurance plans cover the cost of wigs, but they are not covered by Medicare. The bill would “categorize cranial prosthetics—wigs—as durable medical equipment covered under the Social Security Act,” which Pressley said “[will] have a profound impact.”

To be bald as a woman really does disrupt conventional and societal norms of what is appropriate, what is professional, what is attractive, what is feminine.

Rep. Ayanna Pressley (D-Mass.)

Angela Christiano, a molecular geneticist and professor at Columbia University, recognizes how the medical community neglects to view alopecia as a serious disease, and has dedicated her career to researching treatments and cures. When Christiano herself was diagnosed with alopecia “in 1996, just after finishing my postdoc, I couldn’t believe how little research had been done,” she said to Nature. “No one could tell me what caused alopecia areata. It was assumed to be an inflammatory skin disease.”

Today, because of her research and that of her team, scientists know alopecia is similar to other types of autoimmune diseases, such as thyroid diseases, celiac disease, rheumatoid arthritis and type 1 diabetes. Scientists know alopecia as a polygenic disease, meaning “many genes are involved.” One gene discovered in the data, known as STX17, “is involved in pigmentation of hair, [and] we now know that T cells prefer to attack pigmented hair follicles that contain melanin, rather than gray hairs,” said Christiano.

When it comes to hair, Black women in particular, face a different set of challenges. Black women are more likely to develop alopecia from wearing hairstyles that aim to fit workplace expectations. In U.S. and Western cultures, these expectations translate to long and straight, rather than what is natural for many Black women: kinky, curly and invariably, an afro.

In the past few years, there has been a national movement for Black women to embrace their natural hair and wear it in various creative styles. Many of these styles, however, which include protective styles—hairstyles in which Black women wear weaves, braids or twists, in order to “protect” their real hair—have caused Black women to experience early onsets of alopecia areata and traction alopecia. Unfortunately, up to one-third of Black women will experience hairstyle-related hair loss.

Alopecia carries with it emotional weight—embarrassment, shame, sadness and loss. And while women like Ayanna Pressley and Jada Pinkett Smith are ready to shave their heads and embrace their baldness, countless are not. It requires bravery that society has not permitted many women to have.

When it comes to their hair, it will be a great day when women can feel comfortable enough with the way they look to take up space in their communities, alopecia or not. In the words of Ayanna Pressley, ”I’m not here to occupy space, I’m here to create space, and I’m here to be free.”

U.S. democracy is at a dangerous inflection point—from the demise of abortion rights, to a lack of pay equity and parental leave, to skyrocketing maternal mortality, and attacks on trans health. Left unchecked, these crises will lead to wider gaps in political participation and representation. For 50 years, Ms. has been forging feminist journalism—reporting, rebelling and truth-telling from the front-lines, championing the Equal Rights Amendment, and centering the stories of those most impacted. With all that’s at stake for equality, we are redoubling our commitment for the next 50 years. In turn, we need your help, Support Ms. today with a donation—any amount that is meaningful to you. For as little as $5 each month, you’ll receive the print magazine along with our e-newsletters, action alerts, and invitations to Ms. Studios events and podcasts. We are grateful for your loyalty and ferocity.

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Judith Silfrene, M.Ed., is a high school teacher with a passion for women's issues. Her writing explores the intersection of faith, feminism, Black women and literature, with a hint of pop culture. She resides in Brooklyn. For more of her work, follow her on LinkedIn or Instagram.