This information day is for Charles Bonnet Syndrome patients, carers, and families.
What is Charles Bonnet Syndrome?
Charles Bonnet Syndrome (CBS) develops in a child or adult who has a variable amount of sight loss. It causes vivid, silent, visual hallucinations which range from disturbing to terrifying. No other sense is involved. It is not a mental health condition, but caused entirely by loss of sight.
The eye acts as a camera and the brain interprets what is being seen but, as sight is lost, the brain is left with nothing to interpret. Instead of quietening down, it fires up and creates its own images. The images can be simple ones, like coloured blobs, musical notes or geometrical patterns, to more complex hallucinations of people, animals, plants, insects, rodents, reptiles, buildings, vehicles, fire, water or whole scenes. If images of people are seen, they are often in costume of some sort, with hats or headdresses – e.g. Edwardian, Medieval, Middle Eastern or Military.
People are usually aware that the hallucinations are not real because the images are sharp and clear, as opposed to the person’s vision. Some people have recurring hallucinations while others see different images each time. The images can occur frequently or occasionally and can be made worse by stress, isolation, fever, certain medications and other conditions. Everyone’s experience of CBS is different. The hallucinations may grow less frequent in time or may remain for many years.
Not everyone with sight loss develops CBS but, for those who do, the condition can be distressing and debilitating – not least because it may be mis-diagnosed as a mental health condition. Far too many people who develop CBS have received no warning about the condition and, consequently, are frightened to confide in anyone.
What is the information day about?
On 16th March 23 in Manchester, Esme’s Umbrella is pleased to host an information day for all patients, carers and families affected by CBS. The current agreed speakers are as follows and the afternoon will include workshops:
Judith Potts (Founder of Esme’s Umbrella)
Dr Jasleen Jolly (Fellow of the College of Optometrists, Senior Clinical Research Fellow and optometrist in the University of Oxford’s Nuffield Department of Clinical Neurosciences)
Gayle Barrow (Instructor/Researcher at Medical Detection Dogs)
Nina Chesworth (Projects and Campaigns Coordinator Visionary. Lived Experience of CBS)
Miles Northwood (Former England Blind Cricketer, now Community Fundraiser for Guide Dogs)
Dr Lee Jones (CBS Researcher)
View Programme Here: https://moorfieldsbrc.nihr.ac.uk/wp-content/uploads/2024/01/Programme-16.3.pdf
Movie Screening: the final cut of Aspectum – a film about living with the vivid, silent, visual hallucinations that are caused when Charles Bonnet Syndrome develops after sight loss.
Find out more about Esme’s Umbrella Information Day at Manchester Metropolitan University
