{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,19]],"date-time":"2026-05-19T11:07:16Z","timestamp":1779188836223,"version":"3.51.4"},"reference-count":39,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,3,4]],"date-time":"2026-03-04T00:00:00Z","timestamp":1772582400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100008604","name":"Scleroderma and Raynaud\u2019s UK","doi-asserted-by":"publisher","award":["The Mouth in Scleroderma: Improving Pathways to Ca"],"award-info":[{"award-number":["The Mouth in Scleroderma: Improving Pathways to Ca"]}],"id":[{"id":"10.13039\/501100008604","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Health (London)"],"abstract":"<jats:p>Scleroderma is a rare chronic multi-system disease characterised by fibrotic changes in the skin, connective tissues and internal organs. The high mortality rate associated with the condition means that clinical attention is often focussed exclusively in these contexts. This paper reports on a mixed methods study which explored patients\u2019 and practitioners\u2019 experiences of the oral and dental manifestations of scleroderma \u2013 other aspects of the condition that, patients state, also have life-changing, and limiting, effects. The overarching research questions underpinning the study were, what are patients\u2019 and practitioners\u2019 experiences of scleroderma-related dental problems and what strategies can be developed to improve patients\u2019 quality of life? Here we focus exclusively on patients, who reported a significant disjuncture between their own experiences and professionals\u2019 understanding and intervention, such that their scleroderma related oral and dental problems were perceived to be clinically ignored and\/or trivialised. This evident mismatch generates a range of keenly felt absences wherein the patient, the mouth, and the oral cavity more broadly, can be seen to both literally, and metaphorically, dis\/dysappear. We draw on a range of theoretical and empirical perspectives to recognise the complex interplay of priorities and expectations that play out between patient and practitioner, concluding that far greater clinical attention should be afforded to the patient\u2019s own account of their condition whether or not this fully aligns with practitioners\u2019 perspectives. Scleroderma affects in excess of 2.5 million people globally, but the issues we explore here have a resonance far beyond this one rare condition. A range of other auto-immune and chronic conditions, such as type 1 diabetes and rheumatoid arthritis, also prominently feature oral and dental problems and, as such, this work has the potential to help shape the treatment and understanding of the illness experiences of significant numbers of people.<\/jats:p>","DOI":"10.1177\/13634593261419410","type":"journal-article","created":{"date-parts":[[2026,3,11]],"date-time":"2026-03-11T10:15:27Z","timestamp":1773224127000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Ill by mouth? Patients\u2019 experiences of the oral and dental manifestations of scleroderma"],"prefix":"10.1177","author":[{"given":"Elizabeth","family":"Price","sequence":"first","affiliation":[{"name":"University of Hull, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1652-5800","authenticated-orcid":false,"given":"Liz","family":"Walker","sequence":"additional","affiliation":[{"name":"University of Hull, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tyler James","family":"Mills","sequence":"additional","affiliation":[{"name":"University of Hull, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vishal","family":"Aggarwal","sequence":"additional","affiliation":[{"name":"University of Leeds, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Francesco","family":"Del Galdo","sequence":"additional","affiliation":[{"name":"University of Leeds, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2026,3,4]]},"reference":[{"key":"e_1_3_4_2_1","first-page":"59","article-title":"Oral health experiences of the limited scleroderma patient","volume":"95","author":"Beaty KL","year":"2021","unstructured":"Beaty KL, Gurenlian JR, Rogo EJ (2021) Oral health experiences of the limited scleroderma patient. 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