THE PSYCHOLOGICAL EFFECTS OF EHLERS-DANLOS SYNDROME: INSIGHTS INTO LIFE WITH AN INVISIBLE ILLNESS
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Ehlers-Danlos syndrome (EDS) is a heritable connective tissue disorder caused by an irregularity in the collagen and has complications related to joint hypermobility, skin flexibility, and tissue fragility, (March, 2016). The syndrome is also considered an invisible illness. Because it is not readily apparent. EDS symptoms can affect multiple areas of the body which can lead to a negative prognosis. The diagnosis of EDS, the symptoms, and the prognosis can lead the patient to feelings of psychological distress. The purpose of this study is to explore the prevalence of psychological symptoms in individuals with Ehlers-Danlos syndrome and to also assess the treatment they receive from their peers, family members, school, work, and in medical situations. The study was conducted using a survey on websites established for persons with EDS and included questions assessing anxiety, with the Beck Anxiety Inventory (Beck, Fergus, Valentiner, Gillen, Hiraoka, Twohig, & McGrath, 2012), questions assessing depression, with the Patient Health Questionnaire (Kroenke, Spitzer, & Williams, 2001), and questions assessing treatment from others related to this invisible illness. Although the data gathered are not representative of the EDS population, comparisons with established norms for anxiety and depression are made. In addition, concerns related to treatment from others related to having an invisible illness are discussed.