The impact of tuberous sclerosis complex – a parent’s perspective

Abstract

Purpose – The purpose of this paper is to describe the impact of having a child with tuberous sclerosis complex (TSC). Design/methodology/approach – The author explains the process her family has been through on their TSC journey. Findings – Several themes emerge from the author’s story: a lack of awareness about relatively common conditions such as epilepsy; a dearth of accessible information provided to families; delays in identification/assessment and a lack of follow up on parents’ concerns; the wide range in the quality of advice provided from one professional/service to another; the extent to which parents have to advocate for their children and the importance of social support. Originality/value – Few journal articles explore the impact of complex health conditions on families from their perspective and in their own words. This thought provoking viewpoint piece provides a powerful insight into the reality of having a child with TSC.