When failing eyes see horror too clearly

ONE in five people who develop the sight loss condition macular degeneration will experience strange hallucinations — seeing people or faces which are not there.

And the Royal College of Opthalmologists says people diagnosed with macular disease, the most common reason for sight loss in the UK, should be told about the visual hallucinations.

JANICE BARKER speaks to a Lees pensioner who had a terrifying experience as her sight deteriorated . . .

CHARLES BONNET syndrome is the quaint name for a very scary experience which affects 20 per cent of people with macular eye disease.

And although 77-year-old Rita Blakey knew her sight was failing, no one explained to her that she would be one of thousands of people living with the visual hallucinations that occur when the brain replaces images from the outside world.

Rita says the first time she was affected she thought she was going mad.

She explained: “Three men in black, like undertakers, suddenly appeared in my bedroom. They were beckoning to me. I thought my days were up.”

Rita, a great-grandmother, lost the central vision in her right eye around two years ago due to macular disease. The sight in her left eye is not as bad, and she can read with it.

The hallucinations were part of a horrible year. Jimmy, her husband of 53 years, was diagnosed with Alzheimer’s and Rita’s health is poor.

A spinal complaint that means she cannot bend, she has had to give up gardening, and a close friend died recently.

Until a few weeks ago, Rita thought she was also suffering from a mental illness. She said: “I thought I would be sectioned.

“It was the middle of the night and I started screaming when I saw three men standing at the end of the bed,

“I was so frightened. I’ve never experienced anything like that. I’ve never been the type to have nightmares.

“Fortunately, I have one of those panic buttons that you press if you have a fall or something to get someone to come. And they are marvellous.

“Jimmy was no help. He just turned over in his sleep.

“I went to accident and emergency at the Royal Oldham Hospital and a very nice doctor there told me I was not going barmy. ‘You’re not ready for the psychiatric unit’, he said.

“He held my hand and calmed me down and a nurse made ume a cup of tea. He didn’t let go of my hand until I said I felt better.

“If I had been told that the hallucinations were caused by my sight loss, that would have helped me to cope and I would have realised there weren’t really people in my bedroom.

“But It looks so real. They look as if they are really there.”

Anniversary

Other hallucinations occur when there is no light on in the bedroom. But Rita now has a bedside control that switches on the main light with one touch, which usually gets rid of the visions.

She added: “About a year ago, whenever I looked at a framed photo of the whole family that we had taken at my 50th wedding anniversary party, all the faces were the same.

“That lasted about three weeks. Now the picture looks okay.

“You would think the hospital would have someone who could explain things properly to you. Why should people have to go screaming mad before anyone explains what’s happening?

“If I had known about Charles Bonnet Syndrome, I would have understood that those men were not real.

“I would have turned on the light and made myself a cup of tea and that would have been that.

“They don’t frighten me now, but no one really understands what is happening to you. People like me need someone to sit and talk to.

“It is no use just giving people a handful of leaflets to read. There really should be more publicity about the condition.”

Macular disease affects half a million people in the UK. Now, the Royal College of Ophthalmologists and the Macular Disease Society are jointly calling for all eye doctors to warn relevant patients that they may develop Charles Bonnet syndrome.

They say that patients with sight-destroying conditions should be advised, at the time they are diagnosed, that they have at least a 20 per cent chance of developing visual hallucinations.

Although the numbers are unknown, it is thought that up to 60 per cent of patients with severe vision loss develop Charles Bonnet syndrome, which is caused by a lack of visual stimulation and does not indicate any kind of mental dysfunction.

Normally sighted people could develop Charles Bonnet

syndrome if they were blindfolded for a long time.

l To donate to the Macular Disease Society, click on www.maculardisease.org