Jasmine Young was just eight years old when she noticed a cluster of pea-sized bumps underneath her right armpit. The painful, pus-filled lumps came and went for the better part of three years, and they always appeared in the same spot. She thought that maybe she was to blame; perhaps she had been carrying her backpack incorrectly, causing friction between the straps and her armpits. So, she suffered silently, keeping this unusual symptom to herself.
When she was 11, Young decided to tell her mother about the lumps. Her mom attempted to pop them, as if they were pimples or ingrowns caused by shaving. But, seeing no improvement, her mother also grew increasingly frustrated.* So, they scheduled a visit with their family physician to get to the bottom of it.
The doctor treated Young’s bumps as just fistulas, which are abnormal connections that form between the skin and organs or blood vessels and sometimes cause discharge, pain, and irritation.1 For the next five years, Young made monthly visits to his office to get them extracted and drained. “The worst part about that entire experience is that the affected area was never numbed, so it hurt a lot,” she tells Refinery29. “I’d just have to bite down and take a deep breath before he went in for it.”
Young secretly questioned the diagnosis: “When I researched fistulas, I was like, This doesn’t seem right, almost like a puzzle piece that’s not supposed to be in the box.” But she didn’t feel it would be acceptable to call the diagnosis into question. “I was taught to never challenge authority. Plus, I was comfortable with my mom’s trust in the healthcare system. She was going along with it, so I did, too.”
Eventually, one of those pea-sized lumps developed into an exceptionally large mass. Roughly half the size of an orange, it left Young unable to move or lift her arm. She scheduled yet another visit with her doctor, but this time, instead of draining it, he referred her to a specialist.
The doctor scribbled the name and address of a general surgeon on a sticky note. Despite her fear of what was to come, Young mustered up the courage to enter the building. In the exam room, she tried to lift her arm up to show the surgeon the mass, but she couldn’t. Out of frustration, she began to weep. Then, the surgeon said something that would permanently alter the trajectory of Young’s life: “Oh, honey. I know what you have: hidradenitis suppurativa. And tomorrow, you’re going to have surgery.”
Hidradenitis suppurativa, or HS, is a chronic, inflammatory skin condition that can cause painful bumps and deep, pus-filled lumps (known as abscesses) to form underneath the skin. Over time, they can connect into deep, painful tunnels and cause scarring.2 During a flare-up, the abscesses often fill with fluid and rupture, leaving painful open wounds and damaged areas known as lesions on the skin.3 Hidradenitis suppurativa typically appears on areas of the body like the buttocks, groin, breasts, and armpits — places where constant friction can irritate sweat glands and hair follicles. The precise cause of HS is unknown, and there is currently no cure.4
In addition to the painful physical symptoms of HS, the disease is also linked to depression and anxiety5: Patients often suffer from embarrassment and shame, especially when they lack a proper diagnosis. “People feel different from others. People blame themselves. They think it’s due to poor hygiene,” Michelle Henry, MD, FAAD, board-certified dermatologist at Skin & Aesthetic Surgery of Manhattan, tells Refinery29. “And that shame is amplified because HS often appears on regions of the body considered to be more ‘intimate.’”
Hidradenitis suppurativa is particularly prevalent in women and people of color, and Black women, like Young, are especially prone to it.6 The exact reason it affects certain ethnic and gender groups more than others remains “an area of active study,” Dr. Henry says, though genetics, hormones, and environmental factors are all established HS triggers.7
Dr. Henry stresses the importance of an early diagnosis. “Hidradenitis suppurativa can be a progressive disease,” she says. “Without a proper diagnosis, the more severe and long-lasting symptoms can be.”
Dr. Henry has been treating patients with HS — many of whom are of people of color — for nearly 14 years. Although it may affect roughly 1% of the global population8 (that’s about 78 million people), there is much that remains unknown about the disease due to gaps in medical knowledge surrounding it. Even after getting a diagnosis, she says, finding and sticking to an optimal management plan is often challenging, especially for people of color.
In addition to racial bias within the medical field, there’s a lack of access to medical experts who have experience treating skin of color.9 Plus, inflammation-induced redness, a trait of HS, is not as apparent in skin of color, Dr. Henry explains, increasing the chances of misdiagnosis or underestimating the stage of disease progression.
After receiving her HS diagnosis, Young scheduled her surgery for the very next day. That evening, she went to the nail salon with her friend. As the nail technician removed her previous color, Young suddenly got a whiff of a “really, really foul odor. I thought, This woman hasn’t showered in a week and a half.” Then, she felt a wetness permeate the right side of her hoodie. “I was like, It ruptured, it ruptured. Oh my god, it ruptured. And that’s why it’s smelling like that. It’s not anyone else in the salon. It’s me,” Young says.
Mortified, she got up and ran to the bathroom. “I sat there on the floor for an hour waiting for my friend to finish her nails.” Sharing this story brings Young to tears: “It was the single most embarrassing part of this whole journey.”
The next day, with the procedure completed and the abscess cleaned, Young left the hospital with some pain medicine and vague directions on how to clean her gauze-covered wound.“I was in a daze,” she recalls. “I had to ask for help with showering. This shot my ego down the floor. I didn’t have a nurse. I didn’t have anyone, not even my mom, who said she wouldn’t help me [cleanse] myself.”
While Young was grateful to have a proper diagnosis after all these years, HS remained as elusive to her as ever. The clinic where the surgery took place was devoid of brochures and pamphlets about HS, and online resources for people with HS were disappointingly scarce. Where was she supposed to go from here? And how would she manage it when it flared up again?
Young is now a 30-year-old mom of two young boys. Based in Omaha, Nebraska, where she was born, she’s had a total of nine surgeries since that first one at 16. The older she gets, the worse her symptoms have become (Dr. Henry says this is typical with HS). The lesions have spread beyond her armpits to places like her chest, inner thighs, and anal cleft. Flare-ups, she notes, are sporadic, intense, and frustrating, and patience and acceptance seem to be her only recourse. “If I have another doctor think I’m ‘drug-seeking’ because I have a low pain tolerance, I think I might go insane,” she says. “But I was born this way, and I can’t change that. And I can’t change the fact that I’m here and I’m in pain and I need help.”
It’s a never-ending battle, Young continues. “There’s not a moment you don’t wake up and not have HS. There’s not a moment where you’re like, ‘I’m having a great day.’ Instead, it’s, ‘I’m really fatigued because I’ve been battling a flare-up for the last four days.’”
In 2019, Young spontaneously decided to post a video on social media about her condition. In it, she showed viewers a recent flare-up on her armpit and shared the steps she takes to manage it. Almost immediately, it garnered nearly 20,000 views, with so many reaching out to tell her that she wasn’t alone. Apparently, there was an entire community of people like her out there, and the response was a welcome salve for the debilitating loneliness and isolation that can accompany those with HS.
Slowly, she began posting more and more content about her experience with HS. And today, she dedicates a significant amount of her time advocating for greater awareness and research on the disease. Whether Young will see medical advances for HS in her lifetime remains to be seen, but for now, simply talking about it publicly and letting people know they’re not alone is a way to ensure others won’t have to go through what she experienced. “If I could just heal everybody in the world,” she says, “I would.”
In addition to advocating for yourself and finding a supportive community dedicated to those with HS, Dr. Henry stresses the importance of visiting a dermatologist. “We see [HS symptoms] all the time and are very comfortable diagnosing it,” she says. In the meantime, talk to a doctor if you — or someone you know — are experiencing symptoms of HS. For resources, support, or information, visit ShineALightOnHS.com.
*While this is Jasmine’s experience with her symptoms, everyone’s story is unique, and it’s important for each person to have a conversation with their doctor about symptom management.
References
1. Carr S, Velasco AL. Fistula in ano. In: StatPearls. StatPearls Publishing; 2022.
2. Ballard K, Shuman VL. Hidradenitis suppurativa. In: StatPearls. StatPearls Publishing; 2022.
3. Sayed CJ, Hsiao JL, Okun MM. Clinical epidemiology and management of hidradenitis suppurativa. Obstet Gynecol. 2021;137(4):731-746.
4. Nesbitt E, Clements S, Driscoll M. A concise clinician’s guide to therapy for hidradenitis suppurativa. Int J Womens Dermatol. 2020;6(2):80-84.
5. Patel KR, Lee HH, Rastogi S, et al. Association between hidradenitis suppurativa, depression, anxiety, and suicidality: A systematic review and meta-analysis. J Am Acad Dermatol. 2020;83(3):737-744.
6. Kilgour JM, Li S, Sarin KY. Hidradenitis suppurativa in patients of color is associated with increased disease severity and healthcare utilization: A retrospective analysis of 2 U.S. cohorts. JAAD Int. 2021;3:42-52.
7. Sabat R, Jemec GBE, Matusiak Ł, Kimball AB, Prens E, Wolk K. Hidradenitis suppurativa. Nat Rev Dis Primers. 2020;6(1):18.
8. Sachdeva M, Shah M, Alavi A. Race-specific prevalence of hidradenitis suppurativa. J Cutan Med Surg. 2021;25(2):177-187.
9. Buster KJ, Stevens EI, Elmets CA. Dermatologic health disparities. Dermatol Clin. 2012;30(1):53-viii.
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