What is Hidradenitis Suppurativa to me?
A 2017 RjH Backstory.
All images from: Sabat, R., Jemec, G.B.E., Matusiak, Ł. et al. Hidradenitis suppurativa. Nat Rev Dis Primers 6, 18 (2020).
What is HS?
Hidradenitis Suppurativa (HS) is a common, shocking and confronting skin disease. HS is personally disabling, painful, mutilating and is difficult to endure. For doctors HS is notoriously difficult to treat. HS has a chronic, relapsing and remitting nature which in some cases can either quickly or slowly progress to more severe disease of the skin, whole body, spirit & soul. However not all cases of HS have this progressive nature. HS also has complex whole-body features & complex psychosocial features. The whole range of HS people experience includes people who live with HS for the whole of their adult lives, and this disease may simply exist for them as part of their individual identity.
Features of HS
Prominent whole-body features of HS include pain, disordered inflammation and immunity. Prominent psychosocial features of HS include anxiety, depression and a reduced ability to talk about their health. These and other psychosocial features may lead HS people toward social isolation. Psychosocial features of HS may be worsened by untreated or poorly treated pain, disability and society-driven social stigma. The psychosocial effects of HS may lead to delays in diagnosis and delays in accessing adequate and timely healthcare. Both the physical and psychosocial effects of HS may also lead to unemployment and poverty resulting in limited access to health care, social security, social services, and limiting supportive and social networks.
Impact of HS
The visible disease of HS commonly appears within and around skin folds under the arms, groin, and buttocks. The visible disease of HS may also appear elsewhere on the body. Historical medical descriptions of Hidradenitis Suppurativa in the past have focused on the visible eruptions of HS on the skin. Descriptions and images of visible HS may shock and confront the general public. I would like global society to understand that Hidradenitis Suppurativa is absolutely shocking and painfully confronting to those that live with it. HS is also known as the Hidden Disease, most visible signs can be hidden by clothing. Prominent visible effects of HS include disturbing and painful skin eruptions, & subsequent, dramatic and shocking explosions of blood and pus. HS people frequently describe these visible HS signs as being triggered by physical and emotional stress.