The experiences of young people with Epidermolysis Bullosa Simplex: a qualitative study

Abstract

The objective of this study was to explore the experiences of young people with Epidermolysis Bullosa Simplex (EBS). Eleven participants aged 10 -14 years were interviewed and Interpretative Phenomenological Analysis was employed. A key theme was 'self as different'. This related to experiences of negative treatment and exclusion from peers; a lack of understanding of others about the condition; and a sense of the self as 'wrong'. Findings indicate the importance of providing appropriate psychological and peer support, as well as wider community education and intervention, as part of the holistic treatment of young people with this chronic, painful and visible skin condition.