People who suffer terrifying imaginary visions will no longer suffer in silence thanks to a new campaign to raise awareness of a little-known condition.
Charles Bonnet Syndrome can develop when someone’s eyesight is classed as ‘low-vision’ and sometimes results in nightmarish scenes appearing before them.
Some see their surroundings turn to grids, checkerboards, or lattices while others experience more alarming visions such as blazing houses or lose the ability to see faces.
The condition is not well recognised in this country but a campaign is being launched at the House of Commons to publicise it.
It is being launched by campaigner Judith Potts and called Esme’s Umbrella after her mother who was tormented by the condition.
She was frustrated at how few medical professionals and optometrists could help as they hadn’t heard of it.
One victim is Mandy Smith, 55, who endured six months of vivid hallucinations without any clue what was causing them. At one point they were so realistic she was convinced her house was burning down.
The mum-of three from Roydon, Essex, has diabetic macular oedema, a condition which causes a loss of her central vision, but had no idea that she had also developed CBS.
She said: “The hallucinations are quite varied, from colourful psychedelic patterns to dinner plate sized holes in the road. They seem so real.
“I’ve also seen things like a cow in my garden and a rat with a bell round its neck. The worst experience was when I opened the door to my hallway and it appeared as though the house was on fire.”
“This was very vivid, but then I realised the door handle wasn’t hot and so it must have been a hallucination.
“I didn’t tell anyone about the hallucinations when I first experienced them, I found them quite scary and thought that people would think I was going mad.”
It took Mandy six months to find any information about what she was experiencing, but said that once she had she found it much easier to cope with the hallucinations.
Another victim is elderly Reg Nicholls who recently became convinced his room was filled with strangers and a vicious Alsatian was baring its teeth next to him.
Like many of the thousands of people who suffer from the condition, he immediately feared he had developed dementia.
But he then discovered it was CBS which is not a sign of any mental illness and is merely the brain’s response to the distortion in vision.
He said: “This problem starts as if you’re having a shower and the room is full of steam. It doesn’t matter how much you wipe it away, it’s always there.
“I was having problems seeing people and their faces, they looked like an egg, no shape, no eyes, no nose, nothing.
“After that, I was seeing all sorts of strange things that were really worrying me. I panicked.”
Staff at Moorfields Eye Hospital correctly diagnosed Reg as having CBS but the UK’s leading researcher in the condition says very few medics have ever heard of it.
Dr Dominic Ffytche, a senior lecturer in old age psychiatry at King’s College London, said the new campaign is a huge step forward to helping raise awareness.
“People are afraid to reveal the symptoms because they don’t know the possibility of CBS and think it must be something worse,” he said.
“A lot of people don’t even tell their spouses. Having a charity is a real step forward.”
Sarah Wollaston MP is host tomorrow’s launch and she said: “CBS is a condition which can be terrifying for those experiencing it and it is sadly the case that too many people suffer in silence.
“I welcome the work of Esme’s Umbrella in raising awareness amongst GPs, nurses and carers as well as supporting sufferers so that they don’t have to face it alone.
“I’m pleased to be hosting the launch of the campaign in Parliament and urge MPs to come and learn more about the condition.”
Charles Bonnet Syndrome is named after the Swiss philosopher who described the hallucinations suffered by his almost-blind grandfather.
Faced with ‘blank spots’ where the eye has been damaged by macular disease, diabetic retinopathy, cataracts, glaucoma or any other condition, the brain fills them in with all manner of images.