Topic 5: The Burden Extends Beyond Visible Damage

Pain, drainage, odor, pruritus, dressing needs, sleep disruption, restricted movement, sexual-health effects, social withdrawal, and missed work or school can accumulate long before extensive scarring is visible. A 2024 systematic review found a substantial negative effect of HS across physical, psychological, sexual, social, and work-related domains Across the included studies, pain was the symptom assessed most often; this describes how frequently researchers measured pain, not the proportion of patients who reported it. The review nevertheless found moderate-to-high pain levels in patients with moderate-to-severe HS and identified pain as a major source of patient burden.⁶

Diagnostic delay can therefore represent years without an explanation for recurrent symptoms, without disease-specific education, and without a coordinated plan. Receiving a name for the condition can also help replace self-blame with an understanding that HS is a chronic inflammatory disease.