Every day, patients with the same story walk into my office. Young people in their teens, 20s or 30s are exasperated and seeking help for constant painful boils that drain the pus in underarms, groin, and around breasts — a condition called hidradenitis suppurativa (HS). This disease often makes their lives a nightmare. Despite being a more common condition than once thought, many patients see providers for 7 to 10 years without a diagnosis or appropriate treatment.
I’ve studied HS for most of my career, and I see over 150 patients with it every month. It is a chronic skin disease that is common enough that most of us know someone with HS. It begs the question: for such a common and terrible disease, why is it not as familiar to all of us as other chronic conditions like rheumatoid arthritis, which affects a similar percentage of the population?
The answer lies between who is impacted by HS and the historical absence of research and funding, lack of medical education, and stigma resulting in low public awareness.
Research shows that HS is three times more prevalent in Black Americans than white Americans, and 75 percent of new diagnoses are among women. Such a diagnosis — and the time to get there — can be isolating as patients feel stigmatized, withdrawn from social interactions, and unable to keep up with work and school responsibilities.
Moreover, in the process of being treated, many patients are inappropriately told that poor hygiene, smoking, or body size is to blame for these symptoms. Without a correct diagnosis and treatment, many patients undergo repeated painful procedures in urgent cares and emergency rooms to drain abscesses.
As a medical community, we must educate ourselves better and bring public attention to chronic conditions that have a long history of being neglected. In particular, conditions like HS, keloid scars, and endometriosis that disproportionately affect women and people of color have suffered from a lack of research funding and treatment availability.
A delayed HS diagnosis is often due to the condition not being well-known within the medical community. In fact, many doctors lack education or training on how to treat the condition. Many patients I see firsthand have a severe and long-standing disease that has led to progressive disfigurement and disability due to years of being undertreated or not treated at all.
To address this, medical schools across the U.S. must educate students about diseases like HS that have been historically neglected. Nine years ago, I assumed responsibility for the dermatology curriculum for our medical students that spent more than 30 minutes lecturing on topics like acne and psoriasis, but HS was never mentioned until I made a specific effort to include it. Some students may have encountered it by chance during later years of training, but those may have been cases where the diagnosis was not recognized, and myths were perpetuated. Those teaching at medical schools must ensure topics are inclusive and focus on areas where gaps in current medical understanding exist.
The final part of the equation relies on increased patient engagement through public awareness of HS and supporting patients with the tools to advocate for themselves. Non-profit support groups, advocacy organizations, new research, and stories like these can help increase awareness of stigmatized conditions so that patients do not have to suffer in silence. Once patients understand their condition, they can educate their health care providers on what support and care they need.
Many of us sought out a medical career to tackle complex health issues and care for the patients who need us the most. Identifying areas of need and historical neglect is critical to delivering the care that our patients deserve.
Christopher Sayed is a dermatologist.
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