Dad with deteriorating sight hallucinates daughter’s hair turning into fish

Nathan Foy, 41, was born with congenital glaucoma but his vision deteriorated further after his retina detached in his left eye in July 2018. He has since been diagnosed with Charles Bonnet syndrome

A dad who suffers from impaired vision has opened up on his condition which makes him experience hallucinations regularly.

Nathan Foy, 41, was born with congenital glaucoma but his vision deteriorated further after his retina detached in his left eye in July 2018.

The dad from Cardiff was diagnosed with Charles Bonnet syndrome, a condition which causes a person whose vision has started to deteriorate to see things that are not real.

The hallucinations may be simple patterns, or detailed images of events, people or places, the NHS explains.

They are only visual and do not involve hearing things or any other sensations.

Nathan told Wales Online : “I see many different hallucinations every day. At night I’d see my pillow on fire, lighting up the darkness of my bedroom.

“I’d open the oven to a hot, intense air and my brain would tell me ‘look out, there’s a dragon’.

“My daughter shakes her plaits around her head, and from the sound my brain thinks it’s a fish flopping around out of water.”

At the age of 15, Nathan said his vision was reduced to light perception only, and in the dark he would see strange patterns on walls and ceilings.

Nathan wants to raise awareness of Charles Bonnet syndrome as he admitted living with the condition on daily basis has been difficult.

He said: “Not many people I speak to have heard of it before and assume hallucinations are a sign of a mental health problem, rather than linked to sight loss like in my case.

“At one point I was slipping into depression and the hallucinations were making things worse.”

Nathan, who has helped create an animation that tells his first-hand experience of the condition, said his guide dog Mason has kept him safe in his daily life.

He now champions the support he has received from the charity Guide Dogs which has allowed him to open up and chat about what he has experienced.

He said: “Speaking to Guide Dogs saved me. Diana Evans, an orientation and mobility specialist for the charity, took the time to listen and reassure me. The best thing I did was talk about it.

“I hope that this film will raise awareness of Charles Bonnet syndrome and also encourage others with the condition to reach out to Guide Dogs for support.”

Ian Morris, national head of adult services at Guide Dogs, said: “Despite so many people with sight loss experiencing Charles Bonnet syndrome, there is very little awareness or understanding.

“It is thought that the hallucinations are the brain’s response to the gradual loss of information it receives from the eyes and so is trying to fill in the gaps, therefore drawing comparisons with ‘phantom limb syndrome’ in amputees.

“At Guide Dogs, our mission is to increase the independence of people with sight loss. We hope that by sharing Nathan’s experience in the form of this animation, we can raise awareness of the condition and reduce stigma, and let people know of the support available from Guide Dogs.”

Guide Dogs offers support for those who are living with all kinds of different visual impairments, including associated conditions such as Charles Bonnet syndrome.

The charity has a telephone service, Guide Line, with operators who can find people the best support.

Each person who calls is given a contact in their local area and assigned an orientation and mobility specialist.

To help understand the caller and their situation they will be asked a series of questions including how they feel about their sight loss, how any associated conditions are affecting their life, and how they would like their life to change.

The support staff will help to build a plan to help manage their condition and run through all the different services the charity can offer.