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Esme’s Friends – Charles Bonnet Syndrome support group

Have you heard of Charles Bonnet Syndrome? It is a syndrome that affects people with deteriorating sight, and it can cause visions and hallucinations. These visions can be benign, perhaps depicting simple patterns, or even flowers, but sometimes they can appear more sinister. People suffering with CBS have reported seeing people dressed in Victorian outfits, bedraggled children, or worse. Some of the images can be terrifying, others mildly annoying. CBS can affect people who have lost some, or all of their eyesight.

The condition was identified about 300 years ago, but until more recently, knowledge and awareness of CBS has been patchy. As a result of this dearth of knowledge, historically, people reporting symptoms of CBS like visions and hallucinations were at risk of being misdiagnosed with mental illness or dementia. There is still a lack of knowledge around CBS, but organisations like Esme’s Umbrella are working hard to change this through campaigning and supporting research into the condition.

Peer support for Charles Bonnet Syndrome

London Vision has teamed up with Esme’s Umbrella to establish virtual peer support groups for people with Charles Bonnet Syndrome. These sessions allow people suffering with CBS to talk about their hallucinations and share experiences. The groups are also an opportunity to talk more about the condition and its impact in a safe and welcoming space. They are a space for sharing coping strategies. Friends and family are also welcome to attend these sessions.

People living with CBS can often find themselves feeling alone with their experiences: the Esme’s Friends group provides a safe and supportive space for people experiencing the condition. The first meeting of Esme’s Friends was on Thursday 8 October, and they run every two weeks.

The meetings  take place on Zoom, but if you need help or guidance accessing Zoom then please get in touch and we can explain how it works.

We would love to hear from you if you are interested in joining the group or just want to tell us your experience of living with CBS. Please get in touch on info@londonvision.org or give us a call on 020 3761 3651.

Click here to register for the Esme’s Friends peer support sessions.

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