Understanding the Misunderstood: A Hidden Burden in Black Communities

Written By: Melissa Rony MSc, Mentor: Evan Garfain, MD

This article is not intended to be used as medical advice. Views of the author do not reflect the views of the institution.

I was inspired to write this article by the experience of a close friend whose Hidradenitis Suppurativa (HS) was misdiagnosed for many years and whose symptoms were repeatedly dismissed by healthcare providers, allowing her condition to worsen before she received answers. I am writing in the hope that more patients will become aware of HS, recognize early symptoms, and feel empowered to seek care while helping to debunk harmful myths about the condition. Equally important, I hope this encourages clinicians to keep HS in their differential diagnosis, especially when caring for patients of color who are disproportionately affected yet often underdiagnosed. Ultimately, greater awareness can help drive more research, resources, and comprehensive approaches to understanding and treating HS, moving us closer to more equitable care for all patients.

What is HS?

Hidradenitis Suppurativa (HS), also referred to as acne inversa, is a chronic inflammatory condition that causes painfully debilitating persistent lumps, boils and abscess on the skin. It mainly affects the areas that skin rubs together like the armpits, groin, buttock, and under the breast. HS occurs when hair follicles become clogged with keratin, sweat, and bacteria, leading to inflammation and infection. Over time, these pus-filled abscesses can rupture, leaving behind painful, open sores and forming tunnel-like lesions under the skin that can lead to significant scarring.

The pathophysiology of HS isn’t well understood, but it is believed to involve a complex interplay of genetics, hormones, lifestyle habits (such as smoking and poor diet), and excess body fat. In the US alone, HS affects millions. Black patients are disproportionately impacted, with Black patients having a 2.8 times higher risk of presenting with severe HS compared to White patients (1). It is estimated that for every 100,000 Black people, about 300 have HS (2). However, that is likely an underestimate given that many people with HS are either misdiagnosed or remain undiagnosed (3,4).

HS Diagnosis and Management

So why is HS often missed or misdiagnosed? Unfortunately, the answer echoes many longstanding inequities in healthcare: a combination of barriers to accessing care, systematic and structural bias, and lack of HS awareness (5-8). Many patients, particularly in underserved communities, struggle to access a multidisciplinary healthcare team equipped to properly diagnose and manage HS. Comprehensive care and management of HS involves a team of primary care providers, dermatologists, and surgeons, often including both general and plastic surgeons. For far too many, especially those in underserved or low-resource communities, seeking specialized care can involve waiting months for an appointment and traveling long distances to see a provider. Additionally, medical training has historically relied on images of skin conditions in lighter skin tones, contributing to misidentification of HS in Black and deeply pigmented patients, especially during the early stages when it may resemble common acne (5, 9-10). Skin of Color Society has a list of Dermatology textbooks they recommend.

Early diagnosis is critical. Not only does it enable timely treatment, but it also plays a key role in effective pain management and preventing disease progression. In its initial stages, HS may present subtly; with light burning, itching, or increased sweating in skin-fold areas before visible lesions appear. While it is not always the case, HS lesions typically appear symmetrically, affecting both sides of the body. For one reason or another many patients delay seeking care, believing the symptoms aren’t serious or are related to hygiene, which is a harmful health myth. Another myth is that HS is a contagious disease. These misconceptions can create shame, social stigma, and self-blame.

Disparities in Care and Representation

Despite the clear racial disparities in HS prevalence, Black communities remain underrepresented in HS research, clinical trials, and treatment development. Fewer than 6% of practicing physicians in the U.S. are Black, and less than 3% are specialists. This may be one of many contributing factors to why inclusivity in HS representation and understanding among deeply pigmented skin may be limited. The lack of Black physicians limits access to culturally competent care and diverse research perspectives. Medical research and treatment studies often underrepresent the very populations most affected by the disease, and these disparities further limit the generalizability of existing findings and delay the development of truly equitable care.

When the populations most affected by a disease are left out of the science used to understand and treat it, we all lose. Better representation in research is essential to develop equitable, effective, and accessible care.

Looking Ahead

Hidradenitis Suppurativa is more than a skin condition, it is a public health equity issue. For too long, it has gone unrecognized, undiagnosed, and undertreated, especially in the Black community. Breaking the cycle starts with raising awareness, improving medical education, increasing access to culturally competent care, and prioritizing diversity in research. Every skin deserves to be seen, every voice deserves to be heard, and every patient deserves access to the care they need.

Melissa Rony is a 2nd medical student at Albert Einstein College of Medicine with a strong interest in surgery and health equity. She earned her Bachelor of Science in Psychology and a Master of Science in Nutrition before beginning her medical training. Melissa is deeply committed to advancing women’s health, global health, and equitable access to care. Prior to medical school, she worked in population health research and served as a doula, advocating for reproductive justice among Haitian immigrants and refugees in New York City. During medical school, she has contributed to global health initiatives focused on sustainable wound care techniques in resource-limited settings and health equity research with the Montefiore-Einstein Department of Surgery. She currently serves as President of the Association of Women Surgeons (AWS) Einstein chapter. As a Haitian-American and a nontraditional student, Melissa’s experiences continue to shape her commitment to health justice and community-centered care.

References:

1. Ulschmid C, Serrano L, Wu R, Roth GM, Sokumbi O. African American race is a risk factor for severe hidradenitis suppurativa. Int J Dermatol. 2023;62(5):657-663. doi:10.1111/ijd.16428

2. Garg A, Kirby JS, Lavian J, Lin G, Strunk A. Sex- and Age-Adjusted Population Analysis of Prevalence Estimates for Hidradenitis Suppurativa in the United States. JAMA Dermatol. 2017;153(8):760–764. doi:10.1001/jamadermatol.2017.0201

3. Garg A, Wertenteil S, Baltz R, Strunk A, Finelt N. Prevalence Estimates for Hidradenitis Suppurativa among Children and Adolescents in the United States: A Gender- and Age-Adjusted Population Analysis. J Invest Dermatol. 2018;138(10):2152-2156. doi:10.1016/j.jid.2018.04.001

4. Kirby J, Kim K, Zivkovic M, et al. Uncovering the burden of hidradenitis suppurativa misdiagnosis and underdiagnosis: a machine learning approach. Front Med Technol. 2024;6:1200400. Published 2024 Mar 25. doi:10.3389/fmedt.2024.1200400

5. Sabat R, Alavi A, Wolk K, et al. Hidradenitis suppurativa. Lancet. 2025;405(10476):420-438. doi:10.1016/S0140-6736(24)02475-9

6. Wang CX, Buss JL, Keller M, Anadkat MJ. Factors Associated With Dermatologic Follow-up vs Emergency Department Return in Patients With Hidradenitis Suppurativa After an Initial Emergency Department Visit. JAMA Dermatol. 2022;158(12):1378–1386. doi:10.1001/jamadermatol.2022.4610

7. Knecht-Gurwin K, Gurwin A, Łyko M, et al. An Assessment of Clinician Knowledge of Hidradenitis Suppurativa: Insights from a Multidisciplinary Survey Study. J Clin Med. 2025;14(9):3171. Published 2025 May 3. doi:10.3390/jcm14093171

8. Garg A, Naik HB, Kirby JS. A Practical Guide for Primary Care Providers on Timely Diagnosis and Comprehensive Care Strategies for Hidradenitis Suppurativa. Am J Med. 2023;136(1):42-53. doi:10.1016/j.amjmed.2022.09.025

9. Zouboulis CC, Goyal M, Byrd AS. Hidradenitis suppurativa in skin of colour. Exp Dermatol. 2021;30 Suppl 1:27-30. doi:10.1111/exd.14341

10. Jenkins T, Isaac J, Edwards A, Okoye GA. Hidradenitis Suppurativa. Dermatol Clin. 2023;41(3):471-479. doi:10.1016/j.det.2023.02.001