‘Mysterious’ condition causing ‘terrifying’ hallucinations in a million Britons

Nina Chesworth has yet to receive a diagnosis after four and a half years (Nina Chesworth)

Nina Chesworth has yet to receive a diagnosis after four and a half years (Nina Chesworth)

More than a third of UK health experts don’t know about Charles Bonnet Syndrome – CBS – a condition that can cause vivid and sometimes terrifying hallucinations.

A survey of 1,100 health experts – including general practitioners, physicians and optometrists – found that 37 percent were unaware of CBS.

The condition is not caused by mental health problems or dementia. This is purely due to loss of vision – 60 percent or more – which reduces or stops the regular messages from the eye to the brain.

When you lose your vision, your brain receives less information from your eyes than usual, so it sometimes makes up for it with hallucinations.

Of those who are aware, one-tenth of health professionals admit to having a very limited understanding of the condition.

CBS is widespread among blind and visually impaired people, with research suggesting it develops in one in five people who experience vision loss – meaning that at least a million people in the UK are living with the condition.

The study was conducted by Esme’s Umbrella, the UK’s only charity offering support to people living with CBS and their families.

Nina Chesworth, who has yet to receive a diagnosis after four and a half years, spoke about her experience with the disease: “I first started experiencing CBS symptoms right after I lost the sight in my left eye following a traumatic incident.

“After waking up after surgery, I saw a lot of bright colors, but I was told it was my mind playing tricks on me.

“Over time, the colors began to transform into shapes, and then ghost-like images, Picasso-like faces, zombies and animals,” she said.

“But my visions became more and more complex and I couldn’t handle it anymore – at this point I spoke to my GP but they had not heard of it.

“That was four and a half years ago and I still don’t have an official diagnosis.

Nina said she began seeing hallucinations of

Nina said she began seeing hallucinations of “ghost-like paintings” and “Picasso-style zombies and animals.” (Nina Chesworth)

“My ophthalmologist didn’t diagnose it either, and after seeing several specialists, they all had different views on what it could be and what was causing it. Only one said they would look into the CBS opportunity after I told them what it was.

“It became so intense and scary that I researched what the visions could mean – and it wasn’t until I found out about Esme’s umbrella and contacted them that it started to make sense.

Umbrella Esme connected Nina with Professor Dominic Ffytche, CBS’s chief UK researcher, who explained everything to her about the disease and put her in touch with other people who also suffer from the disease.

Nina said: “It was a huge relief to know that this is not a mental health issue and is a possible natural result of vision loss. It made me feel confident again to handle my situation.”

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