An innovative new project from the SYNERG-IE research programme at RCSI University of Medicine and Health Sciences is providing powerful insights into what it means to live with Sjögren’s, a disease that’s more common and complex than many realise.

Titled ‘Snapshots of Sjögren’s’, the project invited 11 people in Ireland living with Sjögren’s disease to document their experiences through photography and personal reflection. The resulting exhibition captures the daily realities, challenges and adaptations involved in managing this chronic autoimmune disease.

Sjögren’s is a disease that affects the entire body. While commonly associated with dry eyes and dry mouth, individuals can experience many more debilitating symptoms such as fatigue, chronic pain and brain fog.

Despite its prevalence and complexity, the disease is frequently under-recognised.

Understanding and action

The study used a method known as ‘photovoice’, in which participants took photographs over December 2024 and January 2025, shared their experiences in interviews and group discussions and played an active role in shaping the themes of the project. Their contributions reflect both the visible and invisible impacts of the disease.

The exhibition will open at RCSI on 23 July 2025 to mark World Sjögren’s Day. It showcases a diverse collection of themes that seek to inform healthcare professionals, policymakers and the public about the lived reality of Sjögren’s.

By blending research, art and lived experience, the project aims to promote greater empathy, understanding and action.

Shared experiences

Professor Michelle Flood, Associate Professor, RCSI School of Pharmacy and Biomolecular Sciences and SYNERG-IE Principal Investigator, highlighted the importance of the event: “These photos and stories give a real sense of what it’s like to live with Sjögren's. This exhibition is about making space for people to share their experiences, in their own way. We hope it helps others understand more about this disease and leads to change, led by the voices of those who live with Sjögren's.”

Jude Coughlan, Sjögren’s patient and a member of the SYNERG-IE public and patient Involvement panel, said: “I am deeply moved by the honesty and poignancy of the photographs and stories in the exhibition. They capture the invisibility, isolation, and exhaustion of living with Sjögren's, as well as the daily effort it takes to manage and adapt.

“This makes me feel seen and understood and reminds me to acknowledge the impact of living with a life-altering autoimmune disease. I'm grateful for something that brings our experiences into the light and hope that it contributes to change for people living with Sjögren's.”

The ‘Snapshots of Sjögren’s’ exhibition will be open to the public at RCSI from 6-8 pm on Wednesday, 23 July 2025. Registration in advance is necessary and is available here.

This research was funded by the Health Research Board.