Understanding the Impact of an Inherited Retinal Disease for Canadians

FBC published a study in the Canadian Journal of Ophthalmology about the physical, emotional and practical challenges that individuals with an inherited retinal disease (IRD) face in Canada.

The study was based on an online survey that asked questions about self-reported vision, genetic testing, health care experiences and disease impact on daily life. The survey was developed by FBC and data was analysed by Dr. Cynthia Qian and Imaan Kherani.

Survey respondents identified having 1 of more than 14 IRDs, with 72% specifying retinitis pigmentosa. 68% reported being legally blind, and more than 85% self-reported moderate to low vision or worse. IRDs impacted daily functioning, with 53% of respondents indicating that their eye disease affected their employment or education. Psychological challenges were evident, with more than 70% worried about coping with daily life, and more than 60% indicating fear and stress. Interviews with individual respondents identified feelings of hopelessness around finding suitable work, loss of independence, and challenges with social interaction with 65% reporting a negative impact on family life. Notably, many had not accessed social support services because of a lack of perceived need, awareness, or availability.

This study was based on responses from over 400 of our community members and we thank all who participated for generously sharing their experience with us and the wider medical and scientific community. This information collected provides a deeper perspective and understanding into what it means to live with a rare and progressive eye disease. It will be a powerful tool as we engage with government, health, and regulatory bodies to improve care and treatments for Canadians living with an IRD.

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