Charles Bonnet Syndrome causes vivid, complex visual hallucinations in psychologically normal people who have severe vision loss. These visual hallucinations can be very distressing if the person does not know that this is a common occurrence if over 60% of eyesight has been lost. CBS may affect up to half of people with severe visual loss. These vivid silent hallucinations can be quite terrifying and have a huge impact on quality of life. There is no cure and the current treatment options are very limited. Older people may worry they are developing dementia and may be scared to mention their hallucinations to anyone else so many people suffer in silence.
However, it is not just elderly people who may develop CBS, it can occur at any age with severe sight loss and so can affect children too. It is thought that the brain tries to ‘fill in the gaps’ creating images of people, animals, buildings or strange shapes which look very real to the person experiencing them. There may be reported ‘visions’ of the whole room being covered by words, maps, grids, trellis-work, musical notes or coloured shapes, sinister images of people, often in costume – Edwardian, Victorian or military and even fire –which can result in calls to the emergency services. Other commonly experienced hallucinations involve children, animals, vehicles, grass, trees, furniture or walls.
Esme’s Umbrella is a campaign dedicated to raising awareness of Charles Bonnet Syndrome sourcing funding, for research and to create ways to support people who develop the condition. Awareness levels still need to grow, both public awareness and in the medical professions. There are many medical professionals who still do not know about CBS. An online information event was held on November 16th, 2020 hosted by NIHR Moorfields Biomedical Research Centre on behalf of Esme's Umbrella, this event marks CBS Awareness Day and comes exactly five years after the launch of Esme's Umbrella. This event was recorded and can be viewed here: https://www.youtube.com/watch?v=Bgvr3QPTIxU
For further information visit charlesbonnetsyndrome.uk or if you think you or someone you know may be experiencing CBS you can call the helpline on 020 7391 3299. Calls are answered by the RNIB Eye Health Team, who are working in conjunction with Esme's Umbrella. Referrals for callers looking for support will be made to Retina UK, whose Helpline is answered by people with personal experience of CBS.