Blog
Charles Bonnet Syndrome and Esme's Umbrella
Posted: Thursday 19th November 2020
2020 marks Rawlings Opticians 125th anniversary, but also marks the 300th birthday of Charles Bonnet. He was a naturalist, who in 1760 described a condition now called Charles Bonnet Syndrome in which vivid, complex visual hallucinations occur in psychologically normal people who have severe vision loss. He documented it in his 87-year-old grandfather, who was nearly blind from cataracts in both eyes but perceived men, women, birds, carriages, buildings, tapestries and scaffolding patterns. Despite how long ago he described this condition, this the awareness of Charles Bonnet Syndrome (CBS) is still too low.
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. 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, military, medieval, middle eastern, Tyrolean) and fire – both of which can result in calls to the emergency services. Other commonly experienced hallucinations involve children and babies, animals, snakes, rodents, insects, frogs, water, vehicles, buildings, plants, grass, trees, furniture or walls.
In the UK it is estimated that a million people of all ages, including children are living with CBS. It is not unusual for a visit to Optometrists to be the first time a person will reveal that they are having these hallucinations, as they may be worried about mentioning it to family and friends.
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.
The event was oversubscribed - five hundred people registered to attend including clinicians, other healthcare professionals and medical students along with people from the CBS community who live with the condition. This event was recorded and can be viewed here.
This response confirms that CBS is, at last, being de-mystified and de-stigmatised, thanks to the campaign led by Esme's Umbrella, which, last year, persuaded the World Health Organisation to give CBS a coding in ICD 11, the eleventh revision of the International Classification of Diseases, the global standard for coding health information. 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.
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