Hidradenitis suppurativa beyond the skin:from pathogenesis to disease burden

Hidradenitis suppurativa (HS) is an underestimated serious skin disease, with debilitating consequences for the personal and professional lives of patients. The estimated prevalence of 1% is probably an undervaluation, since it is still often not recognized by physicians, despite increasing awareness for HS. In addition, there is a patient’s delay in HS, due to embarrassment for the disease, which can include lesions with foul smelling drainage. This often leads to a diagnostic delay of approximately 7-10 years, in which the disease may progress. The exact pathophysiology of HS is not clarified yet and the clinical presentation is heterogeneous, which makes the treatment of HS challenging and the burden for patients tremendous. Medical and surgical interventions are the two main therapeutic approaches for HS. Even though the latter is less well investigated, it remains one of the most effective treatment options for HS. However, surgery itself can add to the burden of patients, as the experience can be traumatizing. Moreover, the clinical appearance of HS often does not correspond with the patient’s own experience of her or his disease. The chronic and unpredictable nature of HS can lead to fear, shame and inhibition of daily activities. Further increasing awareness and a better insight into the prevalence can help reduce the diagnostic delay and help initiate treatment earlier, decreasing the burden for the patient. Therefore, the general aim of this thesis is to gain more insight into the prevalence, treatment targets and outcomes and the extent of the burden of this disease