Hidradenitis suppurativa (HS), like many other chronic skin conditions, can take a frustrating amount of time to accurately diagnose for some people. On the surface, certain HS symptoms—say, painful cysts, pus-filled lumps, and clustered blackheads—can be mistaken as stubborn acne or an infection that’s stirring up trouble. Given that HS is an auto-inflammatory disease that directly impacts the skin,1 people with deeper complexions can experience the condition much differently—from diagnosis to treatment—than people with lighter complexions.
HS may be considered uncommon, but it’s not rare. One 2017 census analysis suggests about 1 in 1,000 people in the United States have HS, and African Americans are three times more likely to develop the condition than white people.2 Meanwhile, a 2021 study led by Stanford researchers discovered that Hispanic people may be more likely to experience severe HS symptoms compared to white people.3
The thing is, these numbers are just rough estimates, as people of color are frequently underrepresented in HS clinical trials and studies.3 Plus, many people—but especially those in marginalized communities—don’t have easy access to a dermatologist (a skin health expert) to solidify a diagnosis. “Many doctors have only seen or studied skin conditions as they manifest on white skin, making it harder for even skilled MDs to accurately diagnose HS in skin of color,” Geeta Yadav, MD, a board-certified dermatologist and the founder of FACET Dermatology in Toronto, tells SELF.
Without early detection and appropriate treatment, HS symptoms can worsen and cause potentially debilitating pain, frustrating scarring, and severe emotional stress, according to the American Academy of Dermatology Association (AAD). So, SELF asked BIPOC dermatologists to break down what people of color should know about hidradenitis suppurativa.
1. To be clear: HS is not a reflection of poor hygiene…
…and it is certainly not contagious, the AAD notes. Experts aren’t sure what, exactly, causes HS. So far, researchers suspect dysregulation of the immune system may play a role,4,5 as HS commonly presents with other autoimmune diseases.6 We also know that HS is “driven by inflammation from within the body,” Kunal Malik, MD, a board-certified dermatologist at Spring Street Dermatology in New York City, tells SELF.
HS symptoms typically manifest after a person hits puberty.7 Inflammatory mediators in the body go haywire and break down keratin, a type of protein, and clog hair follicles—excess keratin, sweat, and bacteria then get trapped inside, per the AAD. These inflamed hair follicles usually form near areas where hair tends to be thick and coarse, like the underarms, groin, and between the buttocks. The inflamed bumps can also appear beneath the breasts and belly folds and between the thighs. The resulting sores can feel itchy or painful, become infected, or even leak odorous pus, Dr. Malik says.7
That last symptom, in particular, is why some people with HS fear that their hygiene routine is off, or feel worried that others might think they are “unclean” in some way. Bottom line: HS does not develop “because you’re ‘dirty,’” Leandra Barnes, MD, the chief resident at Stanford Dermatology who has done extensive research on HS, tells SELF. “It’s not anyone’s fault.”
2. Genetics likely influence your risk of HS.
When it comes to HS risk factors, “there is definitely more research that needs to be done,” Dr. Yadav says, adding that the impact of climate, lifestyle, diet, and access to health care all deserve more exploration.