Photographs Reveal the Hidden Daily Burden of Living With Hidradenitis Suppurativa

Hidradenitis suppurativa is one of dermatology’s most misunderstood and underappreciated diseases. The chronic inflammatory skin condition, which causes painful nodules, abscesses, and draining tunnels known as sinus tracts, most often develops in intertriginous areas such as the armpits, groin, and under the breasts. It affects an estimated one percent or more of the population, typically emerging in early adulthood and persisting for decades. Yet despite its considerable physical and psychological toll, the day-to-day reality of living with the disease has been difficult to capture through conventional clinical measures. A new research letter published in the Archives of Dermatological Research offers a strikingly direct window into that reality by handing the camera to the patients themselves.

The study, led by Timothy Klufas of Bridgeport Hospital and the University of Connecticut Department of Dermatology, together with colleagues at the Icahn School of Medicine at Mount Sinai, Quinnipiac University’s Frank H. Netter MD School of Medicine, and UConn, employed a qualitative research technique called photovoice. Developed in the 1990s by public health researchers Caroline Wang and Mary Ann Burris, photovoice asks participants to photograph aspects of their own lives that illustrate their experiences, then to discuss and interpret those images collectively. The method was originally designed as a participatory needs assessment tool for communities whose voices were rarely heard in policy discussions, and it has since been applied to topics ranging from refugee health to disability advocacy. Its central premise is deceptively simple: people are the experts on their own lives, and images can communicate dimensions of experience that questionnaires and clinical scales routinely miss.

Applying photovoice to hidradenitis suppurativa is a methodologically shrewd choice. The disease’s burden is notoriously difficult to quantify. Objective severity measures such as Hurley stage or the SARTOR score capture the anatomical extent of lesions but say little about pain flares, sleep disruption, wound care routines, or the emotional weight of malodorous drainage. Quality-of-life instruments such as Dermatology Life Quality Index questionnaires compress lived experience into numerical scores that can obscure the texture of daily struggle. Previous systematic reviews, including a 2021 thematic synthesis published in the British Journal of Dermatology, have identified recurring themes among patients, including pain, shame, delayed diagnosis, and frustration with fragmented care, but these syntheses rely on retrospective interviews rather than real-time documentation of daily life.

Photovoice inverts the usual power dynamic of research. Instead of being asked to answer questions formulated by investigators, participants decide what matters. In the context of a stigmatizing disease that affects intimate body regions, this shift carries particular significance. Many patients with hidradenitis suppurativa report years of misdiagnosis, being told their lesions were simple boils or hygiene problems, and a pervasive sense that clinicians underestimate their suffering. By authoring their own visual narratives, patients in the study were able to direct attention to the aspects of the disease that they considered most consequential, whether or not those aspects appear in standard outcome measures.

The technical architecture of the study reflects careful attention to both rigor and ethics. The research received exempt approval from the UConn Health Institutional Review Board under protocol number 25X-256-1, and informed consent was obtained from all participants before each phase of the study through information sheets approved by the University of Connecticut Health Center IRB. Detailed methodology, including the photovoice prompts and analytical framework, is available in supplementary materials deposited in a public Mendeley Data repository, an unusual and commendable degree of transparency for a research letter. The authors report that no external funding was secured for the work, and the investigators declared no competing interests. Study design was led by Klufas, Samir Kamat, and Ksenia Gorbenko, with data collection performed by Klufas and initial analysis and drafting shared among Klufas, Santiago, and Kamat, while Santiago, Albert E Zhou, and Akua Sarfo contributed clinical dermatology insights.

The photovoice approach also has an established pedigree in dermatology specifically. A 2023 study published in the British Journal of Dermatology used the method with people affected by leprosy in Papua, Indonesia, where photographs became advocacy tools that challenged entrenched stigma. That project, titled “The unbreakable journey,” demonstrated that patient-generated imagery could shift public perception and even influence local health communication. The hidradenitis suppurativa study extends this lineage to a disease whose stigma, while less visible to the public, is arguably just as corrosive. Patients frequently describe hiding lesions from partners, family members, and employers, and the resulting social isolation compounds the depression and anxiety that are documented at elevated rates in this population.

What makes visual methods particularly powerful for hidradenitis suppurativa is the disease’s intimate geography. Lesions occur in areas that patients rarely expose and that clinicians may examine only briefly during appointments. A photograph of a carefully arranged wardrobe, a supply of wound dressings, a shower bench, or a car seat cushioned to reduce friction can communicate the logistical architecture of coping in ways that verbal description cannot. The images function as what photovoice practitioners call “shards of light,” illuminating specific moments and objects that anchor broader narratives. When participants then discuss their photographs in facilitated sessions, the collective dialogue generates thematic data that is grounded in concrete, personally chosen evidence rather than abstract prompting.

The findings arrive at a moment of rapid therapeutic progress for the disease. Within the past decade, adalimumab, secukinumab, and other biologics have gained regulatory approval for hidradenitis suppurativa, and clinical trials of additional immunomodulatory agents are expanding the armamentarium. Yet a recurring critique from patient advocates is that trial endpoints and treatment goals often diverge from what patients actually want: less pain, fewer flares, better sleep, and the freedom to plan a life without constant contingency for drainage and dressing changes. A 2024 review in the Journal of the American Academy of Dermatology by Steven Daveluy and Ginette Okoye emphasized that quality of life and the patient journey must be central to care, noting that patients often navigate years of diagnostic delay and fragmented referrals before reaching appropriate treatment. Photovoice data provides precisely the kind of patient-grounded evidence that can help align clinical priorities with lived priorities.

There are also implications for medical education and clinical empathy. Dermatology training emphasizes visual pattern recognition, but typically the images studied are clinical photographs taken by professionals for diagnostic purposes. Patient-generated photography inverts this: the image is not a diagnostic specimen but a testimony. For clinicians, viewing the world through a patient’s camera can be a form of perspective-taking that no lecture on empathy can replicate. Prior photovoice research with Congolese refugee women in the Midwestern United States, published in the journal Health Equity in 2021, showed that longitudinal photovoice combined with interviews could document how participants’ priorities and coping strategies evolved over time, suggesting that the method could similarly track the shifting experience of a relapsing-remitting disease like hidradenitis suppurativa across treatment phases.

The study is not without limitations inherent to its design. As a qualitative research letter, it does not attempt statistical generalization, and the small number of participants typical of photovoice projects means the themes identified cannot be assumed to represent the full diversity of the patient population, which spans differences in disease severity, skin tone, sex, socioeconomic status, and access to care. Photovoice also demands considerable participant commitment, which may select for patients who are already engaged and reflective. Nevertheless, the value of the method lies in depth rather than breadth: it surfaces possibilities and priorities that can then be tested and measured at scale using validated instruments.

The broader significance of the work lies in its demonstration that participatory visual methods deserve a firmer place in dermatology research. As the field moves toward patient-centered outcomes and value-based care, the instruments used to define success must reflect what patients themselves consider success. A photograph, as the study’s title suggests, may indeed be worth a thousand words, but its scientific value is realized only when researchers take the time to listen to those words. By combining a proven community-based methodology with rigorous ethical oversight and transparent data sharing, the investigators have provided a template that other dermatology research groups can adapt for conditions ranging from vitiligo to psoriasis to chronic wounds. For a disease that has historically thrived in silence and shame, the simple act of patients pointing a camera at their own lives and having clinicians and researchers genuinely look may prove to be a quietly transformative form of therapy in its own right.

Subject of Research: Using the photovoice participatory photography method to explore the lived experience of patients with hidradenitis suppurativa

Article Title: “A picture is worth a thousand words”: using photovoice to explore the lived experience of hidradenitis suppurativa patients

Article References: Klufas, T., Kamat, S., Saini, S., Santiago, S., Zhou, A. E., Gorbenko, K., & Sarfo, A. (2026). “A picture is worth a thousand words”: using photovoice to explore the lived experience of hidradenitis suppurativa patients. Archives of Dermatological Research, 318(1), Article 413. https://doi.org/10.1007/s00403-026-04871-6

Image Credits: AI Generated

DOI: 10.1007/s00403-026-04871-6

Keywords: hidradenitis suppurativa, photovoice, dermatology, qualitative research, patient-reported outcomes, quality of life, stigma, participatory research, chronic skin disease, medical humanities, patient experience, skin manifestations