“Is this acne?” “Why am I getting painful bumps in my private areas that come and go without warning?” “Is there something wrong with my hygiene?” “Why don’t I have answers about what’s going on with my body after countless doctor appointments?” These are some of the questions that Tia asked herself while suffering in silence for more than two decades. Then, she learned the truth: she had hidradenitis suppurativa (HS).
“It was a rollercoaster journey to get to a proper diagnosis, and there needs to be more awareness of HS, especially within the Black community. Everyone living with HS deserves an earlier diagnosis and a proper treatment plan,” says Tia.
HS isn’t contagious. Nor is it caused by poor hygiene. It’s actually a lesser-known chronic and progressive skin condition that occurs throughout the body, stemming from an overactive immune system. Inflammation builds below the surface of the skin and painful bumps, abscesses or nodules can appear in private, sensitive areas on the surface of the body. Most commonly, the bumps appear in underarms, groin, or other areas where hair grows, or the skin tends to rub and causes friction or moisture. People often mistake these bumps for ingrown hairs, pimples or other conditions.
“I first experienced acne following puberty and cycled through many products to try to clear my skin, but nothing helped,” Tia explains. “Throughout the years, boils appeared on my inner thighs and underarms, but I dismissed them as acne.”
The recurrence or worsening of symptoms even began to affect Tia’s sleep as certain positions became uncomfortable. Sometimes, boils would bleed from rubbing against her pants. But it wasn’t until one moment in her twenties when the boils became so painful that she sought medical attention at an emergency room.
After 20 years of suffering, Tia finally found a doctor who understood HS, and specifically how it appeared on skin of color. According to research conducted by JAMA Dermatology, Black people are three times more likely to have HS than white people, and women are nearly three times more affected than men. It took finding the right dermatologist who really understood the condition to shed light on the experience Tia painfully and silently endured for far too long. Unfortunately, Tia’s journey is not unique. Many people with HS can end up waiting 7-10 years and seeing five doctors over 17 appointments, for example, before being diagnosed. When it comes to HS, receiving a proper diagnosis early is critical.
Dr. Chesahna Kindred, dermatologist at Kindred Hair & Skin Center in Baltimore, Maryland, and associate professor of dermatology at Howard University, has been treating HS patients since 2014.
“We know HS disproportionately affects Black people, with Black women under age 40 being at highest risk, but we’re still unsure exactly why. Limited research creates another hurdle for dermatologists to properly diagnose and provide an effective treatment plan,” Dr. Kindred says. “People living with HS can benefit from early treatment that can provide symptom management. Impact of HS varies from patient to patient, but we often hear the pain is so intense that people have trouble walking, standing, or simply sitting. Just going about their daily life becomes painful and can lead to feelings of self-consciousness, depression and anxiety.”
Dr. Kindred encourages all HS patients to speak up about the impact of their disease in all aspects of their life.
“Since HS can present in private areas of the body and is even sometimes confused with being a sexually transmitted disease, some people hold back on seeking help because they’re embarrassed; however, it’s only when they’re open and honest that I can provide them with the care they need and deserve. It’s important for doctors to understand the whole impact of HS, and patients shouldn’t wait for a bad day to speak up and seek care. We are here to help, but can only do so much based on what our patients tell us they’re experiencing and feeling.”
Tia began sharing her story on Twitter @KeepItRealHS in hopes of connecting with other HS patients. She says, “Far too many people, especially Black women, are unaware of HS, the importance of seeking care earlier and the support we can provide each other.”
She encourages anyone experiencing symptoms to find a doctor who specializes in treating HS.
“I’m honest with my doctor about not only what’s happening with my symptoms, but how HS is affecting my daily life and mental health,” she says. “You are your own best advocate, so stay in the know about the resources and options available to you, and work with your doctor to develop a treatment plan that you deserve.