{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,19]],"date-time":"2026-02-19T06:24:30Z","timestamp":1771482270561,"version":"3.50.1"},"reference-count":44,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2015,3,26]],"date-time":"2015-03-26T00:00:00Z","timestamp":1427328000000},"content-version":"vor","delay-in-days":25,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["American J of Med Genetics Pt C"],"published-print":{"date-parts":[[2015,3]]},"abstract":"<jats:sec><jats:label\/><jats:p>Joint hypermobility syndrome\/Ehlers\u2013Danlos syndrome hypermobility type (JHS\/EDS\u2010HT) is a hereditary connective tissue disorder affecting every bodily system. It is largely underdiagnosed by many practitioners, with the result of a considerable delay in diagnosis and, consequently, in the onset of adequate management schedule and treatment. Patients may also experience to be misbelieved, erroneously considered affected by a psychiatric or psychosomatic disorders, and rejected by the medical profession, which can lead to feelings of anger and resentment. Patient journeys are often long and complicated, but if doctors allowed the patient time to tell the full story, and were more prepared to think holistically, there may be a far more positive outcome. Here, the patients' perspective is presented with a narrative medicine approach, illustrating the tri\u2010dimensional experience of a JHS\/EDS\u2010HT patient, who is also a Bowen Practitioner and a medical writer\/educator. Narrative medicine would be invaluable in working with JHS\/EDS\u2010HT so that the patient can tell the story, and offer the practitioner a whole picture of her\/his suffering and, often, the key for understanding the cause(s). Once this has been achieved, it might be possible to build upon a more positive and therapeutic dialogue which would result in better treatment and more effective management. It is also important for doctors to communicate with JHS\/EDS\u2010HT experts who will ultimately improve the patient journey and treatment outcomes of such a complex connective tissue disorder. \u00a9 2015 Wiley Periodicals, Inc.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ajmg.c.31428","type":"journal-article","created":{"date-parts":[[2015,3,27]],"date-time":"2015-03-27T22:37:36Z","timestamp":1427495856000},"page":"123-129","source":"Crossref","is-referenced-by-count":17,"title":["The role of narrative medicine in the management of joint hypermobility syndrome\/Ehlers\u2013Danlos syndrome, hypermobility type"],"prefix":"10.1002","volume":"169","author":[{"given":"Isobel","family":"Knight","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2015,3,26]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00296-011-1839-5"},{"key":"e_1_2_7_3_1","first-page":"1","article-title":"Hormonal aspects of hypermobility","author":"Bird H","year":"2007","journal-title":"Hypermobility Syndrome Association Newsletter Autumn"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1176\/appi.psy.45.5.432"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.5402\/2012\/751768"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.36805"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.286.15.1897"},{"key":"e_1_2_7_8_1","first-page":"1265","article-title":"What to do with stories\u2014the sciences of narrative medicine","volume":"53","author":"Charon R","year":"2007","journal-title":"Can Fam Physician"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1097\/ACM.0b013e3182446fbb"},{"key":"e_1_2_7_10_1","first-page":"203","article-title":"Stories for life","volume":"53","author":"Divinsky M","year":"2007","journal-title":"Can Fam Physician"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1192\/bjp.bp.111.092460"},{"key":"e_1_2_7_12_1","doi-asserted-by":"crossref","first-page":"246","DOI":"10.2466\/pms.107.1.246-256","article-title":"Benign joint hypermobility syndrome: Psychological features and psychopathological symptoms in a sample pain\u2010free at evaluation","volume":"107","author":"Ercolani M","year":"2008","journal-title":"Percept Motor Skills"},{"key":"e_1_2_7_13_1","first-page":"96","volume-title":"Hypermobility, fibromyalgia and chronic pain","author":"Ferrell W","year":"2010"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cgh.2014.01.014"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/B978-0-7506-5390-9.50005-8"},{"key":"e_1_2_7_16_1","first-page":"4","article-title":"Hypermobility: An important but often neglected area within rheumatology","author":"Grahame R","year":"2009","journal-title":"Hypermobility Syndrome Association Newsletter Spring"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/40.5.487"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1177\/014107680509800222"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clindermatol.2006.07.013"},{"key":"e_1_2_7_20_1","first-page":"25","article-title":"A patient survey of treatment outcomes in joint hypermobility syndrome","author":"Hakim A","year":"2012","journal-title":"HMSA Newsletter"},{"key":"e_1_2_7_21_1","first-page":"20","article-title":"Tearing up the rule book. 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