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This is a cross\u2010sectional study. In 2018, a postal questionnaire was sent to 71 individuals with genetically verified LDS types 1\u20134 or vEDS, age\u2009\u2265\u200918\u2009years, recruited through a National Resource Centre for Rare Disorders in Norway. Eighteen patients with vEDS and 34 patients with LDS subtypes 1\u20104 participated, the response rate was 74%. Median age was 43.5 (range 18\u201068) years, and 58% were women. Median age at diagnosis was 34\u2009years (range: 6\u201363). Severe vascular\u2010 and multi\u2010organ symptom burdens were found, and chronic pain was reported by 79%. Most respondents (87%) had cardiovascular surveillance visits, 58% yearly or more often, and still 29% had no antihypertensive medications. Three quarters communicated diagnosis\u2010related concerns with their general practitioner. A considerable group (31%) had left work before retirement age. Healthcare professionals should be aware of the spectrum of health burden in adults with vEDS and LDS. A verification of the diagnosis is crucial to counseling, including medical follow\u2010up, education, and work, and advices on precaution and life style decisions.<\/jats:p>","DOI":"10.1002\/ajmg.a.61396","type":"journal-article","created":{"date-parts":[[2019,11,6]],"date-time":"2019-11-06T12:07:59Z","timestamp":1573042079000},"page":"137-145","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["Adults with Loeys\u2013Dietz syndrome and vascular Ehlers\u2013Danlos syndrome: A cross\u2010sectional study of health burden perspectives"],"prefix":"10.1002","volume":"182","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1396-6715","authenticated-orcid":false,"given":"Heidi","family":"Johansen","sequence":"first","affiliation":[{"name":"TRS National Resource Centre for Rare Disorders Sunnaas Rehabilitation Hospital  Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gry","family":"Velvin","sequence":"additional","affiliation":[{"name":"TRS National Resource Centre for Rare Disorders Sunnaas Rehabilitation Hospital  Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingeborg","family":"Lidal","sequence":"additional","affiliation":[{"name":"TRS National Resource Centre for Rare Disorders Sunnaas Rehabilitation Hospital  Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2019,11,6]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.328.7441.702"},{"key":"e_1_2_9_3_1","unstructured":"B\u00f8H.P.&H\u00e5landI.(2002). 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