NYC Woman, 29, Battles Mystery Skin Disease that Sends Her to ER More than 20 Times: 'A Curse' (Exclusive)

When she was 15 and started shaving her bikini area, Chaquira Andrade noticed what she thought was an ingrown hair. Mom told her that it happens sometimes and that she shouldn’t worry.

But then lumps started to appear under her arms. “After that, it quickly spread to other places,” recalls Andrade, a 29-year-old social worker.

Purulent bumps appeared on parts of her body where she did not shave, such as under her breasts and private parts.

“I felt like something was attacking my skin,” she tells PEOPLE.

Andrade was born in Puerto Rico, and her family moved to New York when she was in sixth grade. They lived in and out of shelters and had no health insurance, so she had no regular doctor.

Her mother took her to the emergency room when she was 16, but doctors didn’t know what was causing the painful, itchy, smelly, pus-filled, oozing bumps on her skin. She was in so much pain that she ended up in the emergency room more than 20 times. However, the doctors did not offer a diagnosis.

Chaquir Andrada.

Courtesy of Chaquira Andrada

The painful lumps got so bad that Andrade could no longer comfortably wear bras or underwear. She couldn’t walk. “It hurt so much,” she says. She went from being a girl who always sat in the front of the class to sitting in the back. She tried to wear baggy clothes and hide.

In June 2020, Andrade was referred to a dermatologist who diagnosed her with hidradenitis suppurativa, a chronic, autoinflammatory disease also known as “acne inversa,” because it’s like having inverse, cystic acne in the folds of the skin, according to the Mayo Clinic.

“It’s a terrible condition — it’s like a curse for these patients,” says Dr. Peter Lio, 49, a clinical assistant professor of dermatology and pediatrics at Northwestern University Feinberg School of Medicine, who did not treat Andrade.

Hidradenitis suppurativa lumps in Chaquira’s area under the arm.

Courtesy of Chaquira Andrada

The condition, which is not contagious, usually appears on warm, moist parts of the body, such as the armpits, under the breasts, the buttocks and even between the buttocks. It starts as painful pea-sized lumps filled with pus that may ooze and bleed.

“It can be exhausting,” says Lio. “It can result in horrible, horrible disfiguring scars in those areas that can lead to anxiety, depression. It really messes with people’s heads.”

And it’s difficult to treat, says Lio. For years, doctors used antibiotics, topical medications, cortisone injections, and surgery. “But as it gets more intense, it becomes a big problem,” he says.

Chaquira Andrade after finding treatment for HS.

Courtesy of Chaquira Andrada

In June 2021, Andrade was invited to participate in a clinical trial for BIMZELX, a new biologic injectable treatment that was approved by the FDA on November 20 for the treatment of HS.

Although Lio has a few patients taking BIMZELX, “I wish I could say it’s a cure,” he says. But it makes the situation “significantly better”.

Now Andrade wants to spread hope to other HS patients. Since her diagnosis, she has had nine surgeries to remove the damaged skin. Fortunately, she says, a new drug helped.

“It absolutely changed my life,” she says. “I got my confidence back.”

Chaquira Andrade 2017.

Courtesy of Chaquira Andrada

After sharing her story on Instagram and TikTok, she introduced others to HS and became an advocate for HS awareness.

“I want people to know that there is so much hope,” she says, adding that she rarely has a flash and sometimes just feels the itch. “I want to be that hope for someone.”

Now she travels, feels comfortable in tight clothes and even posted a photo in a white bathing suit. He hopes to start dating.

“I would love to hear someone say, ‘You’re beautiful just the way you are and I love your scars,'” she says. “Someone who won’t see it as a problem, but as something that I’ve overcome, that I’m still overcoming.”

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Source: HIS Education