Abstract
Ehlers Danlos syndrome (EDS) is a multi-systemic, genetic, connective tissue disorder. This study is an early look at the specific impacts of hypermobile and classical EDS in the transitional period of life between the ages of 20-30, coined, emerging adulthood. Participants were recruited through support groups across the United States and internationally, and were asked to complete an online survey designed to collect both quantitative and qualitative data that focused on areas of life that are important to emerging adulthood including education, career planning and relationships. A total of 368 participants expressed varying degrees of adjustment to a diagnosis of EDS. Specific challenges that were highlighted by participants included an impact on relationships with family, friends and romantic partners based on an individual’s severity of symptoms, number of symptoms and current age, as well as experiencing negative physical and emotional impacts of EDS. These results suggest the need for medical professionals to support their patients in a multitude of ways and to be sensitive to this time of transition for those with EDS.