Report
by Alice Thompson – Communications and Events Officer NIHR Moorfields Biomedical Research Centre.
Esme's Umbrella held an information day on Saturday 16 March in Manchester. It welcomed all individuals affected by Charles Bonnet Syndrome (CBS), including patients, caregivers, and families. It was a relaxed and friendly day with excellent speakers and opportunities to ask questions. There was a movie screening of the final cut of Aspectum, a film about living with the vivid, silent, visual hallucinations that are caused when CBS develops. The stars of the film, Nina Chesworth and Miles Northwood, who live with CBS, were also present to answer the guests’ questions.
There was an exciting lineup of speakers, including experts from the medical field, representatives from supporting charities, and individuals with lived experience. The founder Judith Potts led the day, while clinical researchers Dr Jasleen Jolly and Dr Lee Jones discussed their current work and identified paths for future research. Medical Detection Dogs were represented by the instructor / researcher, Gayle Barrow.
Further information about Charles Bonnet Syndrome
CBS develops in a child or adult who has a variable amount of sight loss. It causes visual hallucinations which range from disturbing to terrifying. No other sense is involved. 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. It is not a mental health condition, but caused entirely by loss of sight. 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. If you want to learn more about CBS, please visit Esme's Umbrella's website.
