{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,30]],"date-time":"2026-10-30T18:18:19Z","timestamp":1793384299186,"version":"4.5.0"},"reference-count":30,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2022,1,1]],"date-time":"2022-01-01T00:00:00Z","timestamp":1640995200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["SAGE Open Medicine"],"published-print":{"date-parts":[[2022,1]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives:<\/jats:title>\n                    <jats:p>Ehlers\u2013Danlos Syndrome represents a family of heritable connective tissue disorders that include joint hypermobility, tissue fragility, and skin hyperextensibility. Ehlers\u2013Danlos Syndrome presents with clinical sequela across multiple body systems that require multidisciplinary care. Little is known about adolescents with Ehlers\u2013Danlos Syndrome who are transgender and gender diverse. To date, there have been no reports of transgender and gender diverse youth in pediatric patients with Ehlers\u2013Danlos Syndrome. The objective of this study was to characterize transgender and gender diverse adolescents with Ehlers\u2013Danlos Syndrome seen in a pediatric multidisciplinary specialty clinic.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>A retrospective chart review was performed and it was found that 28 patients were seen in the Ehlers\u2013Danlos Syndrome multidisciplinary clinic were reported being transgender and gender diverse. Chart review included analysis of all documents in the electronic medical record, including demographic data, gender identity, chosen pronouns, specialty care previously received for Ehlers\u2013Danlos Syndrome, symptoms and conditions related to it, and medications.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Of the 166 total adolescents seen in the pediatric multidisciplinary Ehlers\u2013Danlos Syndrome clinic during the study period, 17% reported gender dysphoria. The average age at Ehlers\u2013Danlos Syndrome diagnosis was 13.5\u2009years (range 8\u201317\u2009years). Most (61%) reported their gender identity as transgender, followed by nonbinary (14%). Most had preferred male (he\/him) pronouns (47%), followed by nonbinary (they\/them) pronouns (39%). The vast majority reported fatigue (75%), musculoskeletal issues (96%), psychiatric issues (86%), cardiac issues (71%), gastrointestinal issues (68%), and neurologic issues (79%).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Here we report the first cohort of transgender and gender diverse adolescents in the Ehlers\u2013Danlos syndrome population and show an association between the two. This report increases awareness for providers who care for patients with Ehlers\u2013Danlos Syndrome. As care for those with Ehlers\u2013Danlos Syndrome is often complex and multidisciplinary, providers should adopt practices of gender-affirming medical care that contribute to improved care and outcomes.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/20503121221146074","type":"journal-article","created":{"date-parts":[[2022,12,26]],"date-time":"2022-12-26T01:25:25Z","timestamp":1672017925000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":10,"title":["Gender dysphoria in adolescents with Ehlers\u2013Danlos syndrome"],"prefix":"10.1177","volume":"10","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0986-4991","authenticated-orcid":false,"given":"Jordan T.","family":"Jones","sequence":"first","affiliation":[{"name":"Children\u2019s Mercy Kansas City, Kansas City, MO, USA"},{"name":"University of Missouri-Kansas City School of Medicine, Kansas City, MO, USA"},{"name":"University of Kansas School of Medicine, Kansas City, KS, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"William R.","family":"Black","sequence":"additional","affiliation":[{"name":"University of Kansas School of Medicine, Kansas City, KS, USA"},{"name":"Center for Children\u2019s Healthy Lifestyles and Nutrition, Kansas City, MO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine N.","family":"Moser","sequence":"additional","affiliation":[{"name":"Children\u2019s Mercy Kansas City, Kansas City, MO, USA"},{"name":"University of Missouri-Kansas City School of Medicine, Kansas City, MO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eric T.","family":"Rush","sequence":"additional","affiliation":[{"name":"Children\u2019s Mercy Kansas City, Kansas City, MO, USA"},{"name":"University of Missouri-Kansas City School of Medicine, Kansas City, MO, USA"},{"name":"University of Kansas School of Medicine, Kansas City, KS, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lindsey","family":"Malloy Walton","sequence":"additional","affiliation":[{"name":"Children\u2019s Mercy Kansas City, Kansas City, MO, USA"},{"name":"University of Missouri-Kansas City School of Medicine, Kansas City, MO, USA"},{"name":"University of Kansas School of Medicine, Kansas City, KS, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2022,12,25]]},"reference":[{"key":"bibr1-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1038\/s41572-020-0194-9"},{"key":"bibr2-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1001\/jamafacial.2017.0793"},{"key":"bibr3-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31538"},{"key":"bibr4-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.62625"},{"key":"bibr5-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1002\/mgg3.2057"},{"key":"bibr6-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2019.1608595"},{"key":"bibr7-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1071\/SH17067"},{"key":"bibr8-20503121221146074","doi-asserted-by":"publisher","DOI":"10.20517\/2347-9264.2021.89"},{"key":"bibr9-20503121221146074","first-page":"7472301","volume":"2019","author":"Ishiguro H","year":"2019","journal-title":"Case Rep Psychiatry"},{"key":"bibr10-20503121221146074","doi-asserted-by":"publisher","DOI":"10.3109\/09540261.2015.1091293"},{"key":"bibr11-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2016.06.012"},{"key":"bibr12-20503121221146074","doi-asserted-by":"publisher","DOI":"10.3109\/09540261.2015.1124844"},{"key":"bibr13-20503121221146074","doi-asserted-by":"publisher","DOI":"10.3109\/09540261.2015.1115754"},{"key":"bibr14-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1007\/s10802-013-9804-2"},{"key":"bibr15-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2015-3223"},{"key":"bibr16-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2022.0978"},{"key":"bibr17-20503121221146074","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2015.11.010"},{"key":"bibr18-20503121221146074","doi-asserted-by":"publisher","DOI":"10.4158\/1934-2403-23.12.1437"},{"key":"bibr19-20503121221146074","unstructured":"The Joint Commission. Advancing effective communication, cultural competence, and patient- and family-centered care for the lesbian, gay, bisexual, and transgender (LGBT) community: A Field Guide. Oak Brook, IL: The Joint Commission, October 2011. 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