Ayanna Pressley Opens Up About Living With Alopecia and Hair Loss
The congresswoman from Massachusetts said that she was making peace with the condition in a video released on Thursday.
By Sandra E. Garcia and Roni Caryn Rabin
Representative Ayanna Pressley, Democrat of Massachusetts, revealed in a video released on Thursday that she has a condition called alopecia and is now bald.
“This is about acceptance,” Ms. Pressley said of her decision to publicly discuss her baldness. “I hope this starts a conversation about the personal struggles we navigate, and I hope that it creates awareness about how many people are impacted by alopecia.”
Alopecia — a medical term for baldness — is an autoimmune disease that causes hair to fall out from the scalp, face and other parts of the body.
Scientists are not sure what causes the immune system to attack healthy hair follicles. Most people with alopecia are otherwise healthy, but the hair loss may occur very rapidly and may cause severe emotional distress.
Over six million people in the United States have the condition. It may affect people of any age, sex, race or ethnic group, according to the National Alopecia Areata Foundation. Ms. Pressley’s announcement is an unusual public acknowledgment, as many people work hard to hide hair loss.
In the video, published on The Root, Ms. Pressley described a personal journey, from feeling like herself in signature Senegalese twists to the moment last year that she realized she had alopecia.
“In the fall, when I was getting my hair retwisted, is the first time that I was made aware that I had some patches,” Ms. Pressley said. “From there it accelerated very quickly.”
Ms. Pressley said that she began to wake up to “sinkfuls of hair,” and that she tried wrapping her hair and wearing a bonnet, measures some black women take to protect their hair while asleep. But the efforts failed.
“I did not want the morning to come where I will remove this bonnet and my wrap, and be met with more hair in the sink and an image in the mirror of a person who increasingly felt like a stranger to me,” Ms. Pressley said.
On the day last month when Ms. Pressley was to cast a vote to impeach President Trump, she realized she was completely bald. She wore a wig on the House floor because she felt she had to be present regardless of her hair loss, she said.
“I felt naked, exposed, vulnerable,” Ms. Pressley said. She also felt that she was participating in cultural betrayal, she said, because of all the young girls who looked up to her as a congresswoman who wore braids.
“I felt like I owed those little girls an explanation,” she said.
Toward the end of the video, the representative removes her wig and reveals a smooth scalp. After the video was released, her colleagues rallied in support on Twitter.
“Could you imagine losing all your hair on the eve of an enormously public day? And then turning that intensely intimate ordeal to make space for others? Ayanna, you are a living blessing,” Representative Alexandria Ocasio-Cortez, Democrat of New York, wrote on Twitter.
“Proud to count her as a friend, glad so many in the next generation have her as a role model,” former Senator John Kerry wrote.
“I am making peace with having alopecia,” Ms. Pressley said in the video. “I’m making progress every day.”
Though alopecia occurs at all ages, it is often first diagnosed during childhood or adolescence. About half of children and teenagers with alopecia will see their hair regrow within a year, even without treatment.
But it is a lifelong condition, said Dr. Melissa Piliang, a dermatologist at the Cleveland Clinic: “Once you have it, you have it.”
“It can go into remission, so people may have patches once and never again,” she added. “But it’s an autoimmune disorder. It’s not like an infection that is treated and goes away, and you never have it again.”
The first sign usually is a small bald patch on the scalp. After that, hair loss may occur very abruptly over the course of several weeks, or may progress more gradually, over several years.
The course is extremely unpredictable: Hair may grow back only to fall out again.
Though people who have alopecia are generally healthy, the loss of hair may lead to anxiety, depression and reduced self-esteem. Youngsters with alopecia often experience bullying and ostracism in school. Many people first suspect that people with alopecia have cancer.
“There are studies about how much this impacts quality of life, not just for the patients but for their family members,” Dr. Piliang said. “There are health problems you can have that no one really knows about it, but this is very visible. People are curious and ask questions, and you have to do a lot of explaining.”
“People spend a lot of time trying to cover it up, and that adds to feelings of shame, even though it’s not their fault,” she said. “The congresswoman was quite open about her feelings. I applaud her.”
Several medical treatments may be prescribed for patients with alopecia, including corticosteroids that help regrow hair by suppressing the immune system. But no medication has been approved specifically for alopecia, and the treatment options have been fairly limited.
New drugs called JAK inhibitors have been shown effective for many people with alopecia, but no randomized trials have been done, and the patient’s hair often falls out again once the medication is stopped, Dr. Piliang said.
Margaret Staib, 52, who owns a landscaping company in Greenlawn, N.Y., leads support groups for people with alopecia, which she developed 15 years ago.
It is “a mental and emotional disease, not a physical disease,” she said in an interview. “You don’t know what caused it, how it happened or how to cure it.”
“You look in the mirror and have to get to know your new self,” she said.