Visual hallucinations, ranging from spots of coloured light to full-bodied people, are, for many vision impaired people, a normal part of their sight loss. These are symptoms of Charles Bonnet Syndrome (CBS), a recognised medical condition which many people with vision impairment experience at some point during their sight loss journey. As you might imagine, these sorts of experiences can have a profound impact on people’s lives. However, Charles Bonnet Syndrome is a condition that isn’t always well-understood even by medical professionals, let alone the general public, and so it often goes ignored or misdiagnosed.
I attended a workshop on the first ever Charles Bonnet Syndrome Day on 16th November this year, and there I heard from several people who have experienced the condition first hand. Their stories brought home just how serious this condition can be. Some would see grotesque gargoyle-like figures sitting in their living rooms, while others would see patterns covering the floor and walls to such a degree that they became disorientated and couldn’t tell where anything in the room really was. While there is currently no known cure for CBS, there are various tricks that people can use to help dispel the images, such as wearing sunglasses, adjusting the light levels of the room, or distracting the brain by turning the TV or radio on or off.
However, for many people the first step in dealing with this condition is to understand what it is that they are experiencing. We heard several sad stories during the day about people with CBS who had been misdiagnosed with dementia, and had therefore never received the right support or treatment for their condition. It is important to remember that the hallucinations experienced by people with CBS are vivid, but they are visual only, and cannot be heard, felt, tasted or smelled. But if this is the case, and there is no serious memory loss and no other diagnosed mental health issue, then the hallucinations are more than likely to be the result of Charles Bonnet Syndrome.
The charity Esme’s Umbrella, which ran the workshop in November, is there to give information, advice and support to anybody who is experiencing CBS, or who is concerned about someone they know who is living with the condition. They can be contacted by phone (0345 051 3925) or email (firstname.lastname@example.org), and they also have a website with details of coping strategies and the latest research on CBS, which can be found at http://www.charlesbonnetsyndrome.uk/. If you would like to find out more about the condition, then please do not hesitate to contact them.
Written by Nicola Stokes