Ill by mouth? Patients’ experiences of the oral and dental manifestations of scleroderma

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' and practitioners' experiences of the oral and dental manifestations of scleroderma - 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' and practitioners' experiences of scleroderma-related dental problems and what strategies can be developed to improve patients' quality of life? Here we focus exclusively on patients, who reported a significant disjuncture between their own experiences and professionals' 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's own account of their condition whether or not this fully aligns with practitioners' 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.