Caerphilly woman on condition featured in Coronation Street

Kirsty James, 31, was initially diagnosed with Stargardt’s disease when she was 13. She was told that eventually she would lose her sight completely.

Ms James 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 I was developing serious mental health issues, and I didn’t tell my boyfriend, family or friends what was happening.”

The condition she describes in relation to the hallucinations is Charles Bonnet Syndrome (CBS). It is caused when the brain attempts to fill gaps in visual information with invented images or patterns.

Kirsty James

The often distressing hallucinations vary from person to person and range from simple lights or patterns to complex images.

Ms James said: “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 Royal National Institute of Blind People (RNIB) in Wales has seen a sharp increase in the number of people calling their sight loss advice service to report cases of CBS over the past year. In January this year, there was a 67 per cent increase in calls compared to the same period last year. This was higher than calls for common complaints including cataracts and age-related macular degeneration.

The charity believes that the ongoing lockdown and coronavirus restrictions could be causing the spike.

Recently, the condition appeared on Coronation Street, in which character Johnny Connor started to hallucinate cockroaches, cats and people.

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RNIB’s specialist lead for eye health, Dr Louise Gow, 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’.

“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.”

Currently there is little research into the condition but it is believed that at least a third of people with significant sight loss experience these symptoms. This means that it is estimated more than 100,000 people are living with it, although it is often under-reported.

Kirsty James

The RNIB has launched a talk and support service especially with specialists Esme’s Umbrella for people experiencing CBS. It sees small groups of blind and partially sighted people meet regularly on phone or online to receive peer support.

Dr Gow added: “With the increase we have seen, it is very worrying that awareness of CBS remains low, even among health and care professionals. We have heard of several instances where GPs have mistakenly referred patients to mental health services, rather than directing them to information about how to cope with CBS and ensuring that they see an eye health professional. If this happens, it is possible that the underlying vision issue causing the CBS is not treated and could worsen, resulting in further avoidable sight loss.

“While there is still a lot to learn about the condition, it’s more important than ever that health and care professionals are made aware of CBS. There is a range of support and advice available to help people living with the condition. But patients must first be diagnosed appropriately.”

Anyone with sight loss who is experiencing visions or hallucinations – or any sudden change in their sight – should seek immediate help from an eye health professional or contact RNIB’s Helpline on 0303 123 9999. For more information, visit www.rnib.org.uk.