Living a restricted life with Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos syndrome (EDS) is an inherited connective tissue disorder, primarily affecting the skin, ligaments, joints and blood vessels. The symptoms can vary from undiagnosed cases with mild symptoms to more severe forms. A qualitative study was conducted with the purpose of exploring how individuals with different symptoms of EDS describe their symptoms and perceive their daily life. Eleven interviewees were recruited via a support group in Sweden. The main strategies of the grounded theory method were used in collection and analysis of data. The identified main theme, “Living a restricted life”, seemed to explain the way in which fears, pain, stigmatisation and experiences of non-affirmation in health-care limited the possibility of self-actualisation in daily living and social life. This study provides a conceptual framework for future research and an understanding of the type of professional support individuals with EDS require.