Navigating the Multidimensional Impact of Living with Hidradenitis Suppurativa: An In-Depth Netnographic Study on Social Media Platforms

INTRODUCTION: Hidradenitis suppurativa (HS) is a chronic skin condition causing considerable distress. It impacts mobility, social interaction, and quality of life. In Brazil, there is a notable gap in epidemiological data and patient experiences regarding HS. METHODS: This study, spanning 2019 to 2022, employed netnography to probe the experiences of Brazilian patients with HS. This approach gleans insights from online interactions, offering a direct view into patients’ lives. RESULTS: Notably, the data illuminated the challenges patients face, such as difficulties in obtaining a diagnosis and the complexities involved in managing a chronic, and often debilitating, condition. Furthermore, patients’ experiences with various treatments, encompassing antibiotics, biologic agents, lifestyle alterations, surgical procedures, and alternative remedies, were also examined. CONCLUSION: By undertaking a longitudinal analysis of patient interactions, the study aimed to offer a richer understanding of HS, from its diagnosis to its treatment. It underscores the necessity for a more patient-centered approach when managing this condition. We hope that this enhanced understanding can facilitate better care for those affected by HS.