title: CE: Nursing Management of Patients with Ehlers-Danlos Syndrome.
abstract: Ehlers-Danlos syndrome (EDS), a hereditary connective tissue disorder, has historically been misunderstood and underdiagnosed by health care providers. Because of the high degree of phenotypic variability, patients are often correctly diagnosed only after years of seemingly unrelated but debilitating injuries and illnesses. Specific genetic mutations have been identified for some, but not all, EDS types; patients presenting with a high index of suspicion should be referred to a geneticist. As awareness and recognition of the syndrome improve, nurses are increasingly likely to care for patients with EDS. This article gives a brief overview of the syndrome and provides guidance on ways to manage symptoms, recognize and prevent serious complications, and improve patients' quality of life.
authors.affiliation: Linda K. Anderson is a retired RN in Seattle. She worked for seven years at a community hospital and for 27 years at an academic medical center before taking early retirement as a result of Ehlers-Danlos syndrome-related mobility issues. Contact author: lkkanderson@gmail.com. The author and planners have disclosed no potential conflicts of interest, financial or otherwise.
authors.forename: Linda K
authors.initials: LK
authors.lastname: Anderson
mesh_terms: D000328:Adult; D002648:Child; D004535:Ehlers-Danlos Syndrome / Q000175:diagnosis / Q000235:genetics / Q000451:nursing* / Q000503:physiopathology; D006801:Humans; D010346:Patient Care Management / Q000379:methods / Q000458:organization & administration*; D011788:Quality of Life