Kirsty James, 28, has bravely revealed how hallucinations she suffered while losing her sight took her down a path of depression and anxiety
She was just 13 years old when she was diagnosed with a degenerative eye condition called Stargardt disease, which would eventually make her blind.
To compound matters, Kirsty learned she was also battling Charles Bonnet Syndrome (CBS), a rarely-known condition affecting people losing their sight.
Heightened brain activity meant she started seeing visions and this caused her to believe she was losing her mind.
Hallucinations included seeing people in her flat, or even that a pool of water on the floor was blood coming from her dog’s paws. Silence about her condition led to her suffering from depression and anxiety.
It remains unclear how many people could be affected by the condition, charity Esme’s Umbrella believes there could be around 750,000 people in the UK with CBS.
Speaking on the Victoria Derbyshire Show, Kirsty recounted when her hallucinations first appeared.
She said: “I had moments from when I was losing my sight where I had mistaken things and objects would be different, I didn’t really notice and thought it was just confusion.
“It was only when I was living on my own in a one bedroom flat, that was when it started to happen.
'I thought I was losing my mind, but I was losing my sight.'— Victoria Derbyshire (@VictoriaLIVE) April 6, 2018
Kirsty James says her vivid hallucinations left her afraid, depressed and anxious. She later discovered she had Charles Bonnet syndrome caused by eye disease.
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“My anxiety was really high, and it caused me to have depression at that time. Because I felt that there were people in my flat, I would think there were cars driving down a street, when it was just a narrow cobbled street.
“I was thinking, ‘this isn’t right’. I would be food shopping on my own, and I would be so convinced I was buying salad but it wasn’t. It was kale. At first I tried to laugh about it, but I was thinking ‘no, I don’t know what was going on.’
“There is a lack of understanding, and people think I am a bit weird.”
Kirsty kept it quiet for a very long time, fearing she was “losing her mind”. Now she is able to call on coping mechanisms when hallucinations arise.
Sadly, there are still no doctors, no specialists and no medication available for CBS sufferers.
Judith Potts, who founded Esme’s Umbrella, after her mum was diagnosed with the condition.
“What happens when you lose over 60 per cent of your sight, is that messages from the retina to the visual cortex in the brain, which allows you to see, slow down or stop completely.
“Instead of the brain thinking, ‘this is marvellous, we don’t need to worry about this,’ it actually fires up. You see people, you see animals, you see colours, you see anything.”
'I thought my mother's hallucinations were dementia but she had Charles Bonnet syndrome.'— Victoria Derbyshire (@VictoriaLIVE) April 6, 2018
Judith Potts says there's not enough awareness about the condition, which is caused by eye disease.
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For support on anxiety, and to talk with a professional, visit Counselling Directory.
For more information on CBS, visit Esme’s Umbrella.