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Living with HS: Implications of Hidradenitis suppurativa on lifestyle and its management

Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition that manifests in the form of painful abscesses and sinus-draining tracts. Although previously considered to be a rare condition, it affects approximately 2–4% of the global population.[1] HS is commonly under-reported owing to the affliction being of an intimate nature, primarily affecting genital areas, buttocks, underarms, and the folds of mammary glands, and thus the actual number of people suffering is estimated to be higher still. Furthermore, HS is often misdiagnosed due to the lack of awareness in the healthcare community—most patients receive an HS diagnosis ~7 years after showing the first symptoms. In the early stages, many individuals experience sporadic legions that recede with little to no intervention, making the disease very likely to get miscategorized as acne, a hygiene related issue, or resulting due to hair removal.[2]

Even though considerable research is being conducted on HS in the recent years, the knowledge on its pathogenesis is still limited. Moreover, factors contributing to the pathogenesis of HS are found to be multifaceted. Genetic factors play a significant role; family history is prevalent in approximately 30% of patients with HS. Other prominent risk and trigger factors include obesity, immune dysregulation, and smoking habits. Remission of HS flare-ups in pre-menstrual phases and during pregnancy also hints towards a role of sex hormones.[3]

The severity of HS is usually determined by dermatologists using Hurley Stages 1 (mild), 2 (moderate), and 3 (severe). These stages are characterized by the formation of individual abscesses with no scarring, widespread abscesses with sinus tracts, and widespread tunneling and scarring, respectively.[3]

The most debilitating aspect of HS is the impact it has on day-to-day activities and the mental well-being of the patients. Chronic pain associated with HS is the main cause of distress and reduced quality of life. The pain severity is the highest during the abscess formation. Even singular legions can render movement difficult at best and excruciating at worst. This leads to reduced sleep quality and, in some cases, even insomnia. Weight reduction being one of the most effective measures to induce remission of HS adds on to the frustration of affected individuals as participating in any sports or physical activity may seem out-of-reach when suffering from severe pain.[3] Dealing with drainage of pus from the abscesses can also be embarrassing. In addition, scarring from old legions and fresh flare-ups may contribute to feelings of body dysmorphia. Many suffering from HS tend to isolate and not share the condition even with loved ones, which also inhibits them from seeking medical help till the condition becomes severe.[4]

While looking up this condition—especially as someone who just started seeing some symptoms—may feel discouraging, HS can be managed with consistent, dedicated measures. Making gradual lifestyle changes, such as an improved and balanced diet, integrating movement in the day, and abstinence from smoking, can lead to dramatic improvements, especially in the early stages. Proper wound-care is essential—reach out to dermatologists and incorporate use of anti-inflammatory drugs and anti-bacterial topical ointments to manage flare-ups.[5]

Furthermore, laser and light-based therapies are also an option for the management of HS. Hair removal can be tricky due to increased sensitivity of the skin. Laser-based hair reduction has shown reduced inflammation, assisted treatment of scars, and resulted in overall clinical improvement. Other possible treatment options include surgery, hormone treatments, and the use of biologics. Although there are no standardized protocols available yet and further controlled trials are required, these treatment options seem promising.[5,6]

As the pathogenesis of HS is better understood, the efficacy and number of treatments would also continue to increase. Until then, the patients may empower themselves by observing their bodies with tenderness and care.


[1] Phan, K., Charlton, O., & Smith, S. D. (2020). Global prevalence of hidradenitis suppurativa and geographical variation—systematic review and meta-analysis. In Biomedical Dermatology (Vol. 4, Issue 1). Springer Science and Business Media LLC.

[2] Wang, S. C., Wang, S. C., Sibbald, R. G., Alhusayen, R., Bashash, M., & Alavi, A. (2015). Hidradenitis suppurativa: A frequently missed diagnosis, Part 1: A review of pathogenesis, associations, and clinical features. Advances in skin & wound care, 28(7), 325-332.

[3] Sabat, R., Jemec, G. B., Matusiak, Ł., Kimball, A. B., Prens, E., & Wolk, K. (2020). Hidradenitis suppurativa. Nature reviews Disease primers, 6(1), 1-20.

[4] Pacheco, L.B. (Host). (2022, October 17). Case #02: Athena [Audio Podcast Episode]. In Symptomatic: A Medical History Podcast. iHeartPodcasts.

[5] (2022, November 11). Hidradenitis Suppurativa: Current and Future Treatment. Dermatology Times, Volume 43 (issue 11), 56-58.

[6] Hamzavi, I. H., Griffith, J. L., Riyaz, F., Hessam, S., & Bechara, F. G. (2015). Laser and light-based treatment options for hidradenitis suppurativa. In Journal of the American Academy of Dermatology (Vol. 73, Issue 5, pp. S78–S81). Elsevier BV.

[7] (2022, November 11). Exploring What’s Possible for HS Treatment. Dermatology Times, Volume 43 (issue 11), 77.

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