‘I think it’s important that I’m transparent’: Rep. Ayanna Pressley reveals alopecia diagnosis

Congresswoman Ayanna Pressley’s twists were once her signature hairstyle, but that’s changing due to a medical condition that affects as many as 6.8 million people in the United States.

The representative for Massachusetts’ 7th congressional district revealed she has alopecia in a video series produced by The Root. She tells the story about why her hair story is “both personal and political.”

Alopecia is a disease that develops when the body attacks hair follicles causing hair loss and eventually baldness.

Rep. Pressley first became aware of her hair loss last fall while getting her hair retwisted and it made life on Capitol Hill more challenging.

“In the fall, when I was retwisted, was the first time I was made aware that I had some patches. From there, it accelerated very quickly," Pressley said.

It didn’t take long for her to lose her hair completely.

Dermatologists say that’s what makes alopecia so frightening: it’s very unpredictable.

“Alopecia areata in particular is very tricky for patients because you can develop one patch and it can completely regrow within one year and never be a problem for you again. You can have a patch that leads to many patches that leads to complete scalp loss like Congresswoman Pressley described,” said Dr. Maryanne Makredes Senna of Massachusetts General Hospital.

And once you find a patch of missing hair, there’s no test to determine how much hair you’ll lose and how fast it will happen.

“Unfortunately it’s very hard to predict you know if you fall into which category and if the hair will come back,” said Dr. Vivian Wong of Beth Israel Deaconess Medical Center.

The exact cause is unknown, but it’s thought to be an autoimmune condition.

“We know that the immune cells, instead of fighting colds and protecting us from things to keep us healthy, erroneously go to the bottom of the hair follicle and hover there,” said Makredes Senna.

There are some treatments in clinical trials, but nothing is FDA approved which means getting insurance coverage is a challenge.

And the stigma, especially for women, continues to be an issue.

“I believe seeing so many of these patients, 50 new patients a month that there is lack of acceptance of alopecia being an important medical problem and I think that only adds to the burden of people experiencing these health conditions,” said Makredes Senna.

It’s a common condition, one that I suffered from myself. In one picture of me getting ready to go on air, I discovered a patch of hair missing. That was the first, there were four others after that. I lose almost half of my hair. Thankfully, I was able to hide it and I never lost it all.

And a year later, it grew back.

That’s the thing with alopecia: sometimes you get lucky.

I was afraid I was going to lose all my hair, so I joined online support groups.

In her interview with The Root, Pressley shared her experience of dealing with loss in multiple areas of her life. She lost her final patch of hair on the anniversary of her mother’s death and her political mentor, Elijah Cummings, had just passed away.

RELATED: Rep. Elijah Cummings dead at age 68

She decided to go public with her condition to free herself from the shame that comes with it.

“I think it’s important that I’m transparent about this new normal,” Pressley said.

This interview was the first time Pressley revealed her bald head to people outside of her family and close friend group.

As she gets adjusted to her “new normal” she is finding joy in new options for hairstyles.

RELATED: Rep. Ayanna Pressley endorses Sen. Elizabeth Warren for president

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