A woman who experiences hallucinations due to sight loss has spoken out about her condition.
Kirsty James, 31, from Caerphilly, has Charles Bonnet Syndrome (CBS), which is caused by the brain attempting to fill gaps in sight loss with images or patterns.
Kirsty was diagnosed with Stargardt’s disease, which affects vision, aged 13. She was told at the time of the diagnosis that she would eventually lose her sight completely.
Kirsty said: “When I was 21, I lost a significant amount of my vision very suddenly and was left with no central vision. I began to experience vivid hallucinations.
“At the time, I was unaware of the condition and thought that I was developing serious mental health issues, and I didn’t tell my boyfriend, family or friends what was happening.
“I eventually learnt about CBS from my optician, who explained that the condition causes the brain to replace images with hallucinations as it tries to make sense of what it’s seeing, which was a huge relief.”
The condition, which can be distressing for people experiencing it, has been highlighted in recent episodes of long-running ITV soap Coronation Street, where character Johnny Connor (Richard Hawley) has been experiencing CBS.
The Royal National Institute of Blind People (RNIB) in Wales has said ongoing lockdown restrictions could be causing a spike in hallucinations due to sight loss – with an increase in the number of people calling RNIB’s sight loss advice service.
It is believed at least a third of all people with significant sight loss experience these symptoms.
Dr Louise Gow, specialist lead for eye health at RNIB, said: “The increase in calls and emails we have received about CBS since lockdown has been dramatic. And the visions that are being reported are much more vivid than usual, which has left many people feeling particularly distressed – describing their hallucinations as ‘out of control’.
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“It’s as though the stress and anxiety of coronavirus, and the resulting restrictions, has had an impact on people’s symptoms. Although there is currently no research to confirm such a link, it would seem stress and lack of stimulation can increase symptoms.”
A new support service for people experiencing CBS has been launched by the RNIB.
Anyone with sight loss who is having visions or hallucinations can contact RNIB’s helpline on 0303 123 9999. More information can be found at rnib.org.uk.
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