Charles Bonnet Syndrome 101 With Dr. Keith Gordon

Living Blind

For this episode, and in light of Vision Health month, Naomi Hazlett sits down with BALANCE’s own Dr. Keith Gordon for a conversation all about Charles Bonnet Syndrome. Often described as the ocular equivalent of Phantom Limb, Charles Bonnet Syndrome is a condition where by people with vision loss experience visual hallucinations. Nearly one in five people with vision loss have CBS, and while it was discovered 250 years ago, it remains largely unheard of, undiagnosed, or diagnosed incorrectly. In fact, up until he began doing research on the condition with the Canadian National institute for the blind, DR. Gordon had not heard of this condition after 30 years in the ophthalmic industry. And, until she began working with clients and staff at Balance For Blind Adults, Naomi had not heard of it either.

In this interview, DR. Gordon tells stories about the research he has conducted up to this point, including some of the things people have reported seeing and how they feel about them, how many ophthalmologists, retina specialists, independent living instructors and other practitioners inform their patients of Charles Bonnet, and the reluctance and fear that people have about talking of their experiences with their hallucinations. He also elaborates on the neurological research that has been conducted up to this point, stressing that more investigation must be done at the level of the brain in order to gain more understanding about the condition and potentially find a cure.

The two of them offer advice to both the general public and medical community on how to deal with CBS appropriately, and while there is currently no cure or treatment, DR. Gordon offers practical solutions for those with CBS on how to cope with these visual hallucinations when they occur.

Dr. Keith Gordon is Chair of the Board of Directors at Balance for Blind Adults, and is currently the Senior Research Officer of the Canadian Council of the Blind (CCB). His primary research interests lie in the area of ophthalmic epidemiology. He is an adjunct professor in the Department of Ophthalmology and Vision Sciences at the University of Toronto."

Find out more about Charles Bonnet Syndrome through the following resources:

Charles Bonnet Syndrome Foundation Australia

Charles Bonnet syndrome - RNIB - See differently

Charles Bonnet Syndrome - Retina UK

Esme's Umbrella: https://charlesbonnetsyndrome.uk/

The show notes and transcription for this podcast can be found at https://www.balancefba.org/podcast/season-2/

Donate to BALANCE: https://www.balancefba.org/donate/