Charles Bonnet Syndrome- Information and Support
Charles Bonnet Syndrome, which can also be known as CBS or visual release hallucinations is a type of psychophysical visual disturbance in which a person with a visual impairment, either severely or partially experiences visual hallucinations.
How does Charles Bonnet syndrome affect you?
CBS hallucinations are caused by sight loss. The way in which it affects an individual varies. This condition isn’t an indicator of any types of mental health issues. The person experiencing this syndrome see images which aren’t there and how these images present varies between person to person.
The types of hallucinations people with CBS may experience fall into two main areas:
- simple repeated patterns or shapes, such as grids or brickwork patterns or colours
- complex hallucinations of objects, such as people and landscapes.
Beyond the visual aspect of the hallucinations there are no other types of sensory stimulation, so you aren’t able to hear, touch or smell what you are ‘seeing’. It is common for these hallucinations to reduce over time, in some cases people can completely stop having them. One in five people who experience sight loss are said to develop CBS as a secondary condition. The prevalence is amongst people of the older generation but research is suggesting that it is common amongst young people, but may be undiagnosed, due to not being fully understood by the young person.
Charles Bonnet Syndrome Explained
Video created by the Macular Society which gives and in depth overview of the condition and features leading expert in the syndrome, Dr Dominic Ffytche.
What causes CBS?
Charles Bonnet syndrome presents when someone of any age, including children, loses more than 60% of their sight. The sight loss can be caused by a variety of eye conditions, stroke, cancer of the eye, an eye injury, diabetes, MS (multiple sclerosis) or any other condition which damages the optic nerve.
As sight diminishes, the messages which run from the retina in the eye to the visual cortex in the brain slow or stop, leaving the brain with nothing to interpret – so it creates its own images.
- The loss of vision and how the brain responds to it.
- Exactly how sight loss leads to hallucinations isn’t really known.
- Sensory deprivation.
- Your brain can sometimes fill in these gaps caused by sight loss by creating new fantasy patterns or pictures.
- CBS tends to start in the weeks and months following a big deterioration in your sight but can develop at any time.
Treatment and coping with Charles Bonnet Syndrome
There is no known cure or treatment for Charles Bonnet syndrome. There are some techniques that can help you cope and manage the condition. These include:
- Changing your position when you have a hallucination
- Moving your eyes or staring right at the hallucination
- Using additional lighting in your surroundings
- Stimulating your other senses by listening to audiobooks or music
- Engaging in social activities to avoid social isolation
- Reducing stress and anxiety
Helpful Links and Organisations
Esme’s Umbrella
A UK based, national charity that offers a safe shelter for anyone living with Charles Bonnet Syndrome. Whether you’re seeking knowledge about symptoms, seeking solace in shared stories, or striving to spread awareness, they are there to help you on your journey. The organisation was founded by Judith Potts, in memory of her mother Esme who had Charles Bonnet Syndrome. Judith wrote the world’s first article about CBS and continues to write and speak about this perplexing and disturbing condition. In November 2019, she launched Esme’s Umbrella at the House of Commons, in memory of Esme. The Campaign became at charity in December 2021.
Click here to find out more about their services.
Click here to find out more about their research projects.
Click here to find out more about news and events.
RNIB
A national UK based charity that supports both children and adults with a variety of sight loss conditions. They have a comprehensive page about Charles Bonnet syndrome, covering causes, how it can effect sight, how it can be managed and coping.
Click here to find out more about the condition
Click here to find ‘Talk and Support’ information groups
Connect with other parents and find support with VICTA
Join the VICTA Parent Network – with almost a thousand members! You’ll find parents who have vision impaired children of all different ages and with various eye conditions. You can use the group to ask questions you may have and connect with parents of children with shared conditions or from your local area.
Visit the support section of the VICTA Parent Portal here to find out about support groups, both in your area and online.
VICTA activities
VICTA is a national charity supporting children and young adults who have a vision impairment from 0 to 29 years. We have a calendar of fun and engaging activities across the year to help young people make friends, grow in confidence and gain the skills they need for an independent future.
Visit the VICTA activity calendar >
Stay up-to-date with VICTA’s news and latest activities on social media @VICTAUK.
Blind Mum Vs the World
@blindmumvstheworld on Instagram.
Hannah is a content creator sharing her journey as a parent and young person with oculocutaneous albinism, nystagmus, photophobia and Oscillopsia and her guide dog.
Albinism Adventures
@albinismadventures_harry on Instagram.
Toddler Harry has Oculocutaneous Albinism and his family share the journey from diagnosis, through development stages and raise awareness for what the condition involves.
Harry and mum Jessica
@harrytathamsanderson on Instagram.
Mum Jessica share Harry’s journey enjoy the world around him and raising awareness for young children with albinism.
