Woman, 33, experiences scary hallucinations due to syndrome

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When Kirsty James, from Caerphilly, was just 13 she started losing her sight. At first she had difficulty reading the whiteboard at school, and when she could no longer recognise her own mum in the street her family took her to hospital. It was here that she was diagnosed with Stargardt disease, a condition that causes loss of central vision.

In her 20s her vision deteriorated to less than 60 percent, and this was when the frightening hallucinations started.

Kirsty, now 33, explained: “It’s like somebody has had their leg removed and their brain still thinks it’s there.

“With me, my brain still thinks I can see, so puts these images in my head. I will see people’s faces when they are not really there. It’s tiring and scary.

“If I’m walking down some steps and it has been raining it might appear like a massive pool of water in front of me, or a black hole.

She recalled: “Once I actually screamed outwardly because I was looking at my guide dog’s paws and they seemed to be covered in blood.”

It was particularly difficult for Kirsty when she lived in a flat alone.

“I would think people were in my flat when they weren’t, or I would look out the window and see faces there,” she said. “Or I’d be at a party and would see lots of colours and would wonder what was going on.”

Kirsty, who has worked as a campaigns officer with Royal National Institute of Blind People (RNIB) Cymru for six years, experienced depression and anxiety because of the hallucinations.

Like many people with Charles Bonnet syndrome, she started to question if she was mentally ill and it wasn’t until she met her now husband Thomas James in 2011 that she started to talk to him about the hallucinations and began to realise what was happening.

She would tell him there were lorries going down the street but when they weren’t really there.

Kirsty went to a low vision specialist who suggested she might have Charles Bonnet syndrome.

“I was literally crying when I got the diagnosis because I thought I might have been going a bit mad,” Kirsty said.

Through counselling with RNIB and support from Charles Bonnet syndrome charity Esme’s Umbrella, she has been able to ease her anxiety around the hallucinations even though she is still experiencing them and is keen to raise awareness.

She added: “Often older people get diagnosed with it and in the past there were cases where it was misdiagnosed as dementia.

“It’s so important for people to talk about this condition as once people know what’s happening to them they can start to live with it.”

What is Charles Bonnet syndrome?

Charles Bonnet syndrome causes people of any age with sight loss tp start seeing hallucinations – things that aren’t really there.

They might see simple repeated patterns or shapes, such as grids or brickwork patterns or have complex hallucinations of people, objects and even landscapes.

The images appear very suddenly, lasting for just a few minutes or in some cases, several hours, but can be much more detailed and clearer than the person’s actual vision.

What causes Charles Bonnet syndrome?

If your visual pathway works well your eyes stop the brain from creating its own pictures. When you lose your sight, however, your brain isn’t receiving as much information from your eyes as it used to.

Your brain can sometimes fill in these gaps by creating new fantasy patterns or hallucinations.

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