Living with Ehlers Danlos Syndrome: An Emerging Adulthood Perspective

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dc.contributor.advisor Buck, Cassandra en_US
dc.contributor.author Bealka, Kathryn
dc.date.accessioned 2018-05-14T17:36:47Z
dc.date.available 2018-05-14T17:36:47Z
dc.date.issued 2018
dc.identifier.uri http://hdl.handle.net/10192/35654
dc.description.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. en_US
dc.description.sponsorship Brandeis University, Graduate School of Arts and Sciences en_US
dc.format.mimetype application/pdf en_US
dc.language English en_US
dc.language.iso eng en_US
dc.publisher Brandeis University en_US
dc.relation.ispartofseries Brandeis University Theses and Dissertations
dc.rights Copyright by Kathryn Bealka 2018 en_US
dc.subject Ehlers Danlos syndrome en_US
dc.subject Emerging Adulthood en_US
dc.subject Transition en_US
dc.subject Genetic Counseling en_US
dc.subject Relationships en_US
dc.subject Emotional Impact en_US
dc.subject Physical Impact en_US
dc.title Living with Ehlers Danlos Syndrome: An Emerging Adulthood Perspective en_US
dc.type Thesis en_US
dc.contributor.department Graduate Program in Genetic Counseling en_US
dc.degree.name MS en_US
dc.degree.level Masters en_US
dc.degree.discipline Genetic Counseling en_US
dc.degree.grantor Brandeis University, Graduate School of Arts and Sciences en_US


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