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 line, Chaquira Andrade noticed what she thought was an ingrown hair. Her mom told her it sometimes happens and that she shouldn't worry.

But then she started getting the bumps under her arms. “After that, it rapidly went to other places,” recalls Andrade, a 29-year-old social worker.

The pus-filled bumps appeared on parts of her body where she didn't shave, like underneath her breasts, and her private parts.

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

Andrade was born in Puerto Rico, she and her family moved to New York when she was in sixth grade. They lived in and out of shelters and did not have health insurance, so she did not have a regular physician.

Her mother took her to the emergency room when she was 16, but doctors didn’t know what caused the painful, itchy, smelly, pus-filled, leaky lumps on her skin. She was in so much pain that she ended up in the emergency room more than 20 times. Still, doctors offered no diagnosis.

The painful lumps got so bad that Andrade could no longer comfortably wear bras or underwear. She couldn’t walk. “That’s how much pain it was,” she says. She went from a girl who always sat in the front of the class, to sitting in the back. She tried to wear loose clothing 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 your skin, according to the Mayo Clinic.

“It’s a terrible condition — it is like a curse for these patients,” says Dr. Peter Lio, 49, Clinical Assistant Professor of Dermatology and Pediatrics at Northwestern University Feinberg School of Medicine, who did not treat Andrade.

The condition, which is not contagious, can arise anywhere there is a hair follicle. It usually appears in warm, wet parts of the body, such as armpits, under the breast, buttocks and even between butt cheeks. It starts as painful, pea-sized, puss-filled lumps that can ooze and bleed.

“It can be debilitating,” Lio says. “It can result in terrible, terrible disfiguring scarring in these areas that can lead to anxiety, depression. It really messes with people's heads.”

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

In June 2021, Andrade was invited to participate in a clinical trial for BIMZELX, a new biologic injection treatment that was FDA-approved to treat HS on Nov. 20.

While Lio has a few patients who take BIMZELX, “I wish I could say it was a cure,” he says. But it does make the condition “significantly better.”

Now Andrade wants to spread hope to other patients with HS. Since her diagnosis, she had nine surgical procedures to remove the damaged skin. Thankfully, she says, the new medication has helped.

“It has absolutely changed my life,” she says. “I’ve gained my confidence back.”

After sharing her story on Instagram and TikTok, she met others with HS and has become an advocate for HS awareness.

“I want people to know that there’s so much hope,” she says, adding that she rarely has a flare and sometimes just feels itchy. “I want to be that hope for somebody.”

She now travels, feels comfortable wearing tight clothing and even posted a photo in a white bathing suit. She hopes to start dating.

“I would like to hear somebody say, “You’re beautiful for who you are, and I love your scars,” she says. “Someone that is not going to see it as a problem but see it as something that I overcame, that I’m still overcoming.”