Woman with rare condition welcomes going blind as it will stop her hallucinating

A partially sighted Belfast woman has said she is looking forward to going completely blind so she will no longer have to deal with a rare condition which causes her to experience terrifying hallucinations.

Elaine Macgougan, 64, suffers from Charles Bonnet Syndrome (CBS), a neurological condition which causes patients to see things that are not real.

False images are triggered when the brain tries to fill in the gaps caused by sight loss.

CBS hallucinations can be complex and detailed, often involving people, animals, or objects. They can also manifest as shapes or patterns.

Now I have so little eyesight that (if) somebody (is) sat beside me, (it’s) like looking at a shape through a thick fog

Ms Macgougan has lived with sight loss since birth. As her eyesight has deteriorated, the effects of CBS have gotten progressively worse.

Having lost sight in her left eye, she now has only 15% vision in her right eye.

She said she looks forward to the day when she loses her sight completely so she “won’t have to deal with hallucinations”.

Ms Macgougan said: “It will be a relief. I can get on with the rest of my life without the CBS getting in the way, without the stress of having to second guess everything I see.

We were coming out of a Japanese restaurant when I saw this tiger walking down Royal Avenue

“Now I have so little eyesight that (if) somebody (is) sat beside me, (it’s) like looking at a shape through a thick fog.

“So yes, it will be a relief.”

A common hallucination with CBS is one of crawling insects.

Fellow sufferer Alec Patterson, 55, from Ballymoney, Co Antrim, described how he looked down to see his daughter’s dinner plate covered in insects.

On another occasion, he saw a tiger walking past him as he and his wife walked along a busy city street.

Mr Patterson said: “We were coming out of a Japanese restaurant when I saw this tiger walking down Royal Avenue, much to the laughter and giggles of my two kids.

“It was then we started asking questions and I found out that I had Charles Bonnet Syndrome, which now makes life quite interesting.”

Saturday is Charles Bonnet Syndrome Awareness Day. Sight loss charity RNIB Northern Ireland is attempting to raise public consciousness of the condition.

Peer support in disability can help challenge stigma and help people who experience low self-esteem and loneliness

The exact cause of CBS is not fully understood, but it is believed to be related to changes in the brain that occur in response to visual impairment.

Hallucinations can be triggered by low light conditions, sudden changes in vision, or specific eye conditions such as age-related macular degeneration or cataracts.

There is no treatment. The focus for eye care professionals is on managing the underlying vision problem as well as providing reassurance, emotional support and coping mechanisms such as cognitive behavioural therapy.

Micheal Smith, Campaigns Officer for RNIB NI, has urged people with CBS to join a support group.

He said: “Peer support in disability can help challenge stigma and help people who experience low self-esteem and loneliness.

“As time went by, the group has evolved from peer support to a campaigning role.

“This group is the first step on the campaigning path and the group are to begin to discuss how their future will look.

“They have an excellent model to follow after the successful launch in October of the Belfast See Change group – a campaigns group comprised of blind and partially sighted people focused on issues in the city of Belfast.

Further information is available by emailing CampaignsNI@rnib.org.uk.