An Exploration of Quality of Life among Ontario Postsecondary Students Living with the Chronic Illness Ehlers-Danlos Syndrome

Abstract

Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder that results in negative health events. It also holds potential for periodic or permanent disability and psychosocial stress. While a diagnosis of EDS can occur at any age, the psychosocial effects of an EDS diagnosis can be especially challenging when symptoms present during postsecondary education. This qualitative study examined the psychosocial effects of EDS on the quality of life of Ontario postsecondary students (n=11). After a brief online eligibility survey, one-to-one semi-structured interviews were conducted. Thematic analysis of interview data revealed that emotional factors such as anxiety and depression, faculty and peer attitudes including issues of judgment and stigmatization, and feelings of frustration affect the quality of life of postsecondary students living with EDS.