Daily Living in Young Adults with Ehlers-Danlos Syndrome (EDS)

Abstract

Background and Significance: Ehlers-Danlos Syndrome (EDS) is a rare, genetic connective tissue disorder that effects the production of collagen in the body, resulting in chronic pain, hypermobility and the need for many medical interventions. There is often a delay in diagnosis into adolescence or young adult life due to variability in multi-organ symptoms and their severity leading to misdiagnosis and uncertainty. Connective tissue holds the whole body together and when the collagen in that tissue doesn’t work the way it is supposed to, it can make changes in the way people live their lives. Methods: A qualitative, phenomenological study was conducted to explore what changes this condition can make to a person’s life. 5 women aged 18-22 were interviewed in person or via video chat. These interviews were later transcribed and analyzed. Results: Themes that emerged from the data were pain limiting daily tasks, the invisibility of the disease, and uncertainty about future of the condition.