Acne inversa: A rare disease with far-reaching consequences for those affected : Experiences and wishes of patients

Abstract

Patients affected by acne inversa (hidradenitis suppurativa) initially notice skin changes in atypical areas of the skin. These changes can include purulent inflammation, painfully filled and red-discolored bumps or oozing and strongly smelling, small to larger openings. In order to be able to receive medical help, patients must present to the general practitioner, report their complaints and also show the lesions. This represents an enormous inhibition threshold for those affected. However, the disease is usually recognized too late. This less known skin condition is often confused with other skin diseases. Even after diagnosis, adequate treatment is not always guaranteed. On the patient side, too, fear and feelings of shame prevent the patient from visiting the doctor, long-term therapies without success create afeeling of hopelessness, and fear of losing one's job are reasons for seeking therapy too late. The quality of life is lowest compared to individuals with other dermatoses. In addition to interdisciplinary treatment, the diverse situations experienced by those who are affected need to be acknowledged in social and medical settings.