Snapshots of Sjögren’s is a research-related photography exhibition that aims to highlight the everyday experiences of people living with Sjögren’s disease, a chronic autoimmune disease. Although considered a ‘hidden’ disease, Sjögren’s can severely disrupt daily life due to symptoms like dry eyes, dry mouth, pain, and profound fatigue, leading to significant healthcare challenges and a diminished quality of life. Despite its impact, the disease remains under-recognised by both the public and healthcare professionals, partly due to its ‘hidden’ nature, resulting in delayed diagnoses and inadequate support.
This project uses photovoice, a research approach where people use photographs to tell their own stories. For this project, people living with Sjogren’s have taken photos that reflect their personal experiences. With support from the research team, participants will co-design and co-organise an exhibition of their photographs. They will decide, for example, which images to display, who should be invited to the event, and guide where/how the exhibit should take place. The exhibition seeks to improve the visibility of the illness and make it known to the patient community and others; potentially sparking dialogue and debate.
The event is designed to increase awareness and start conversations not only within the patient community, but also among healthcare professionals, policymakers, and the wider public. By sharing these stories visually, we aim to improve understanding and awareness of this under recognised disease and encourage better care and support for those affected. The exhibition is managed by a team that includes a patient-researcher living with Sjögren’s and RCSI PPI Ignite Network Programme Manager, ensuring that the project is rooted in genuine experiences and perspectives.
The event outcomes will be shared on the wider research programme and RCSI’s communication’s channels, as well as through a series of community talks to extend the reach and impact of the participants’ voices.