This Friday marks the first Charles Bonnet Syndrome awareness day launched by charity Esme’s Umbrella. Daria Neklesa from local sight loss charity Galloway’s discovers how sufferers can be helped by a diagnosis of this little-known condition
Ghostly figures that loom out of the darkness, hideous distorted faces and abstract patterns that appear from nowhere – this is how the world appears to some sufferers of Charles Bonnet Syndrome.
The little understood syndrome was first identified around 250 years ago by Swiss Philosopher and natural science enthusiast Charles Bonnet.
Charles observed that his grandfather started to experience hallucinations after he developed cataracts. But despite the visions, Charles’ grandfather still seemed cognitively alert and did not appear to be suffering from other symptoms commonly associated with mental health problems.
The term Charles Bonnet Syndrome has since been used to describe visual hallucinations associated with sight loss.
For thousands of people living with sight loss across the UK, hallucinations form the backdrop to everyday life.
And while many are able to ignore the images, for others the syndrome can make them fear for their mental wellbeing.
It was at a meeting with an adviser at local sight loss charity Galloway’s, that a Fulwood grandmother first raised her concerns about troubling visions she had been having in the dead of night.
Linda McCann first developed Glaucoma 30 years ago. But it wasn’t until her eyesight deteriorated even further, following a diagnosis of macular degeneration and cataracts, that she first encountered strange visions.
The 68-year-old former physiotherapist’s assistant said: “I used to wake up at night and see people in the corner of my bedroom. I was absolutely terrified.
“Sometimes I would see an elderly man, sometimes an elderly woman. The lady would wear a long cape which covered her head and reached down to the floor. They were so real and very scary - they looked exactly like you would expect a ghost to look.
“They would start at the bottom of my bed and glide towards me. When they reached me they would stop. I tried to reach out and touch them but there was nothing to feel. It was very frightening, I thought I was losing my mind. I didn’t really want to tell anyone about it.
“It was through help I received at Galloway’s that I learnt about Charles Bonnet Syndrome. I’d never heard of it before. Now I know it’s just my brain trying to make sense of missing information and although it’s disturbing, it’s certainly not frightening anymore.
“Thankfully, I haven’t had any visions for a while now, but if it returns, I’ll know exactly what it is.”
Experts say that the hallucinations often appear after a deterioration in eyesight but can also appear years after sight loss first began.
Charles Bonnet expert, Dr Dominic Ffytche who is a Reader in Visual Psychiatry at King’s College London said: “Charles Bonnet Syndrome is a term used to describe visual hallucinations caused by sight loss.
“Although the majority of people who experience this syndrome do not feel that the hallucinations cause a problem, around one-third find the condition distressing. It is those people that need to be reached.
“A survey conducted six years ago found that there was very little awareness among people with sight loss and health care professionals.
“We hope that this is starting to change following campaigns undertaken by Esme’s Umbrella, as well as through on the ground support by sight loss charities such as Galloway’s. If you suspect you have the condition and are finding it distressing, it is important to seek medical help.
“A doctor will be able to rule out other causes as well as perhaps change medication which may be exacerbating the problem.”
Dennis Cushing, 93, first developed Charles Bonnet Syndrome 15 years ago following a diagnosis of macular degeneration.
The great-grandfather from Preston said that he started to see patterns and shapes after his eye-sight deteriorated which then developed into more detailed visions.
Dennis said: “Two particular images started to appear that became part and parcel of my Charles Bonnet Syndrome.
“One was a Japanese Admiral who appeared in full military dress and long coat. He would walk towards me while at the same time moving his head backwards and forwards. His mouth was moving as though he was talking, but he never made a sound.
“He always wore a long coat, and it was so detailed, I could see his legs moving beneath the material as he walked towards me. I used to tell him to buzz off. I also used to see the most evil looking woman you could imagine.
“I called her Mrs Fernandipants. I only ever saw her face and shoulders and she always wore a beige hooded anorak.
“As she came towards me, her face would distort in a horrendous way. Her nose would lengthen and sharpen and her face just looked evil. Thankfully, I have never really been too troubled by the images. I realised early on that they were a consequence of my eye-sight issues.
“But I can definitely understand how some people could become upset. I would always say to those people to go and seek help. Don’t suffer in silence.”
Recent research published by the Macular Society revealed that up to 50% of people suffering from macular disease experience visual hallucinations.
Yet despite its frequency, Charles Bonnet Syndrome is often not considered when assessing patients who report visual hallucinations.
Jenny Lloyd, Head of Services at Galloway’s, said: “Too many people are still suffering from the more negative effects of Charles Bonnet Syndrome in silence. We have heard of stories where people wake up every morning to trains rushing at their heads, ghostly figures that tower over them peering at their faces, as well as more benign hallucinations such as flowers, butterflies and birds.
“It is not uncommon for visually impaired people to wait years before they seek help, as they can be fearful that the hallucinations signal the onset of dementia, when in fact it is simply a symptom of their sight loss.
“Health care professionals do not always consider the possibility that the hallucinations may be a consequence of a visual problem, particularly among older patients. We would ask that anyone who is treating or caring for a person who is living with sight loss asks about hallucinations.
“Sometimes simply knowing that the hallucination is a natural consequence of a deterioration in eyesight is enough to reduce the symptoms.”
Galloway’s has been helping to support people living with the effects of Charles Bonnet Syndrome by providing counselling and support groups.
To visit Galloway's Charles Bonnet Syndrome support groups or for more information about helping Galloway’s, call 01772 744 148 or visitwww.galloways.org.uk
* Between 16,000 and 100,000 experience a distressing form of CBS in the UK.
* 45% of people with CBS may experience hallucinations for four years or more.
* Sixty-seven per cent of patients with CBS had not heard of CBS when their symptoms started.
* Around a half of these patients discussed it with a medical professional but around a third of the professionals consulted were unfamiliar with CBS.