79-year-old Attleborough woman fights for more awareness of syndrome which causes vivid hallucinations for those with sight loss
Losing your sight is a difficult enough ordeal, but for Doreen Render, the experience was all the more terrifying as she started to see apparitions of gorillas, snakes and “evil” faces all around her, as her sight faded.
What the experts say
Doctor Dominic Ffytche, a senior lecturer at King’s College London’s Institute of Psychiatry, is behind the study. He said that although Charles Bonnet Syndrome has traditionally been thought of as “benign” and even “pleasant” for those who experience it, the survey results paint a different picture.
“Indeed, it has been questioned whether it should even be considered a medical condition given it does not cause problems and goes away by itself,” he added.
Although there is currently no treatment for the syndrome, Doctor Ffytche said that the survey had helped to highlight the importance of raising awareness.
“All people with Charles Bonnet Syndrome are relieved or reassured to find out about it and our evidence shows the knowledge may help reduce negative outcome,” he added.
The 79-year-old was so unsettled and embarrassed that she didn’t even confide in husband Harry, for fear of him not believing her.
Six years on, Mrs Render, from Attleborough, has been diagnosed with a macular degeneration which led her to experience Charles Bonnet Syndrome - a condition which causes those who have been affected by sight loss to suffer vivid hallucinations.
Now Mrs Render, who lives on Thieves Lane, hopes to spread the word and raise awareness.
She has spoken out after the publication of new research, in the British Journal of Opthalmology, which found that - out of a sample of 492 people - 36pc of those who suffered hallucinations after sight loss thought the medical professional was “unsure or did not know” about the diagnosis.
Charles Bonnet Syndrome
The syndrome is named after Charles Bonnet, an eighteenth century Swiss naturalist and philosopher who first described the condition.
It causes people who have lost their sight to experience vivid hallucinations. It was previously assumed that the visions were only temporary - with most sufferers seeing them for a year.
However, the study revealed that 80pc of respondents had been experiencing them for five years or more.
It found that 38pc of respondents found the hallucinations startling, terrifying or frightening when they first occurred. 46pc said they had an effect on their ability to complete daily tasks.
People who have CBS are generally elderly, as many have lost their sight to age-related conditions.
There are thought to be more than 100,000 cases of CBS in the UK.
For information, advice or support contact the Macular Society’s helpline on 0300 3030 111 or email firstname.lastname@example.org
“People really, really need to know - especially if they live by themselves. There must be an awful lot of frightened people going through the same thing as I was,” Mrs Render said.
When she started experiencing unusual apparitions - gold and silver flashes and dimming lights in the room - Mrs Render put it down to her blindness in one eye.
“I didn’t tell anyone. I just thought I was going mad. It was really difficult,” she said.”My friends and family didn’t know, but I finally confided in one friend who I knew would believe me.”
It was after the loss of sight in both eyes, three years ago, that the visions became more vivid.
“I started seeing boomerangs coming at my face. They came so fast and with such force that I used to put my hands up”, she said.
Soon, Mrs Render was seeing snakes, gorillas and floating wardrobes on a regular basis - but the worst was yet to come.
She said: “I wake up from sleep and when I open my eyes I see faces – it started off with a lady’s face and it was so evil it frightened the life out of me.”
Reaching breaking point, Mrs Render phoned the Macular Society for a solution, who advised her to get involved with the study.
Mrs Render said; “Having macular degeneration is devastating, it really is life changing. Through the Macular Society I’ve been speaking to other people who have the condition, which has really helped. I now know I’m not the only one.”
Have you been affected by Charles Bonnet Syndrome? Contact Lauren Cope on email@example.com