She Thought It Was Just Razor Bumps—Then Came 9 Surgeries and 40 ER Visits. This Latina Is Breaking the Silence on HS
From the time I turned 27, my skin began to change. Although I had always suffered from folliculitis due to my Arab and Latin heritage, I believed waxing—and avoiding razors like the plague—was the solution to controlling my infected follicles. But over time, the breakouts in my armpits and bikini area took a turn. My skin developed painful, swollen lumps, which later formed deep tunnels under the surface. The shame and agony were enough to keep me silent. I convinced myself it was my fault, something I could fix with better hygiene or different skincare.
Then, one day, by sheer luck, my family doctor noticed and diagnosed me: I had hidradenitis suppurativa (HS).
Thanks to treatment and careful management of my hormones, I’ve learned how to keep this chronic disease under control. But for the longest time, I thought I was alone. That is until I spoke with Chaquira Andrade, a Latina who endured an even longer, more painful journey—and refused to stay silent about it.
What Is Hidradenitis Suppurativa (HS), and Why Does It Take So Long to Diagnose?
According to Dr. Jennifer Hsiao, associate professor of dermatology at the Keck School of Medicine at USC, HS is a chronic, painful, and recurring inflammatory skin disease. It manifests as deep nodules, abscesses, and draining tunnels, primarily affecting the armpits, groin, and buttocks—though it can appear anywhere on the body where there are hair follicles.
Unlike acne, HS is not an infection and is not caused by poor hygiene. But because it mimics boils, cysts, and even sexually transmitted infections (STIs), many patients go years without a proper diagnosis. According to Dr. Hsiao, the average time from symptom onset to diagnosis is 10 years, and most people receive three or more misdiagnoses along the way.
For Chaquira, that journey took 40 ER visits, nine surgeries, and 20 different dermatologists before she got answers. “I knew something was wrong, but no one could tell me what it was,” she shared.
‘I Had to Be My Own Advocate’—Chaquira’s Journey to an HS Diagnosis
Like many people with HS, Chaquira’s symptoms first appeared during puberty. “I started to experience symptoms at 15 years old, which I thought were typical ingrown hairs,” she said. “I noticed tiny pimples in my groin and armpits that became extremely painful and started spreading. These grew into large, pus-filled lumps under my skin, which were very painful and left scars.”
What made her journey even harder was the lack of access to healthcare. Her family had just moved from Puerto Rico to New York, living in and out of shelters. Without health insurance, the emergency room became her only option. But after 20 ER visits, she was still left without a diagnosis.
“As a teen and young adult, I often navigated emergency room visits and doctor appointments on my own,” she said.
The key to finally getting a diagnosis? A medical journal.
“We know our body best, and we need to follow our instincts,” she said.
“My medical journal allowed me to inform every new ER doctor, physician, and dermatologist of all the treatments, procedures, and surgeries I have been through,” Chaquira explained. “It’s so difficult to explain that having a journal was a critical reference.”
How Hidradenitis Suppurativa (HS) Affects Mental Health and Self-Worth
The pain of HS isn’t just physical—it’s emotional. Many people with the condition experience social isolation, shame, and even depression.
“For so long, I thought my HS symptoms were my fault,” Chaquira admitted. “That I was the cause for this terribly painful skin condition. Once I was properly diagnosed and learned about HS, I knew I wasn’t to blame. My diagnosis led me to become an HS warrior.”
Dr. Hsiao echoes this sentiment: “The symptoms of pain, discharge, and scarring are not only a physical burden. People with HS also experience stigma, worrying about or directly experiencing negative attitudes and reactions from society in response to their symptoms. These feelings can lead to embarrassment, social isolation, low self-esteem, and sexual life impairment and impact all areas of life, including interpersonal relationships, education, and work.”
So, how did Chaquira begin to embrace her HS? By finding the right doctor, the right treatment, and owning her narrative.
From HS Warrior to Self-Love Advocate
When Chaquira finally got diagnosed, she learned about a clinical trial for BIMZELX, a newly FDA-approved treatment for moderate-to-severe HS. “Finding a doctor who cares about my goals and a medication that is helping me manage my symptoms has reinforced that HS won’t stop me from living my life and pursuing my dreams,” she said.
But her biggest transformation wasn’t just physical—it was emotional. “I went from an HS caterpillar to an HS butterfly,” she joked. “HS doesn’t define who I am, and I believe it can be beautiful. It has taught me to love my body and my scars and to feel confident in a bathing suit and short shorts. We typically hide things we are afraid of, and I embrace it.”
Now, she’s open about her condition, whether with friends, family, or romantic partners. “When meeting new people, I don’t hide that I have HS. I want them to see my tenacity, how I have navigated experiences and challenges but come out the other side loving myself.”
Medical Gaslighting and HS in Communities of Color
Like many women of color, Chaquira experienced medical gaslighting—when doctors dismissed or downplayed her pain. Dr. Hsiao notes that African Americans are three times more likely to develop HS than white patients, but it’s unclear why.
“Before my diagnosis, I was told to use a different razor, to switch my soap, to shower more often. None of that was the cause,” Chaquira emphasized. “This is why we need better awareness. HS is not our fault.”
Her advice for others? “Education is power, and knowing more about HS allows us to speak up and ask for the care we deserve.”
How to Spot HS and Get the Right Treatment
According to Dr. Hsiao, early detection is key. “HS symptoms can appear anywhere on your body where there are hair follicles, but they most commonly affect skin fold areas such as under the arms, the breasts, buttocks, groin, and inner thighs,” she explained. “Symptoms include abscesses that can leak and drain and tunnels. Unlike other conditions such as ingrown hairs, where if you stop shaving, you notice that you no longer have any symptoms, HS is chronic and persistent.”
There are many treatments that can help manage HS symptoms. As Dr. Hsiao continued, your doctor may recommend treatment with one or more of the following medicines: topical or oral antibiotics, hormonal or metabolic therapies, or a biologic. Biologics work to reduce the symptoms and progression of HS by limiting inflammation. The most recently approved biologic available for HS is BIMZELX – the only FDA-approved medication that targets IL-17A and IL-17F, blocking their ability to contribute to inflammation.
When patients have more advanced HS, procedural therapies may be needed in addition to medical therapies.
Spreading Awareness: ‘The More We Talk About HS, the Less Power It Has’
Despite how common HS is, most people have never heard of it. And that’s exactly why Chaquira is using her voice to change that.
“At the beginning of my journey, like so many others who live with HS, I often thought, ‘What did I do to cause this?'” she concluded. “Nothing. We did nothing to cause this. The biggest misconception that I want to debunk about HS is that it’s caused by something we did—but it’s not.”
Talking about HS can be scary because, as Chaquira explained, skin conditions make people uncomfortable as they often wonder if it’s contagious. “Is it an STD? Am I dirty? The answer is no. And, as someone living with HS, we just want to feel supported and seen.”
“Education is power, and knowing more about HS allows us to speak up and ask for the care we deserve.”
