15 April, 2025
Inherited retinal diseases (IRDs) are genetic conditions that typically cause vision loss in working-age adults, representing a unique hidden disability characterised by variable progression rates.
In a research report published recently in the Disability and Health Journal, “Navigating a hidden disability – Lived experiences and challenges of adults with early stage inherited retinal diseases“, (Bekir et al, 2025), it was highlighted that individuals with IRDs face complex, often invisible personal and social challenges beyond vision loss, underscoring the need for greater awareness, targeted support, and broader societal understanding of hidden disabilities.
Retina Australia’s Chair, Leighton Boyd AM, Company Secretary, Rosemary Boyd OAM, and Director, Dr Ceecee Britten-Jones were contributing authors on this research paper.
Research Report Summary
Research Objective
To explore the lived experiences of adults in the early stages of living with an IRD, when vision loss is not visibly noticeable.
Research Method
- Semi-structured interviews were conducted with 15 individuals (average age of 37 years old), all diagnosed within the past 10 years.
- Thematic analysis was used to identify key themes.