The experiences of young people with primary lymphoedema

Abstract

This article presents the findings of a study investigating the experiences of seven young people who were diagnosed with primary lymphoedema before the age of 25. A phenomenological approach was taken and data collected using audio-taped conversational interviews, which were transcribed and analysed using a thematic framework. The findings revealed that young people had struggled to secure a diagnosis and find appropriate treatment, which appeared to be caused by a general lack of professional awareness of lymphoedema. Evidence of a desperate need to keep the lymphoedematous limb hidden became apparent which affected all aspects of their lives - fashion, education, relationships with family, friends and peers and physical activities - and caused difficulties with self-esteem and self-image. Children and young people with lymphoedema all differ because of intrinsic (genetic makeup) and extrinsic (family, surrounding environment, life experience) factors. Therefore each must be considered an individual and the experience unique to them.