A WELSH man has spoken about his sight-loss condition to raise awareness of the symptoms and the support available.
Nathan Foy, 41 from Cardiff, is one of at least 100,000 people in the UK with Charles Bonnet Syndrome.
The condition causes people with sight loss to experience intense visual hallucinations, usually related to things they feel or hear. The hallucinations can be simple patterns but can also be complex images including events, people, places or animals.
As part of today’s Charles Bonnet Syndrome Awareness Day, charity Guide Dogs has released an animated video which tells Mr Foy’s story to help raise awareness of the condition.
Mr Foy, who has congenital glaucoma and has always had limited vision, said: “Living with Charles Bonnet has been really difficult. Not many people I speak to have heard of it before, and assume the 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. But 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.”
The animated film explains what its like to live with the condition and reveals the wide variety of hallucinations Mr Foy experiences every day, including seeing his daughter’s plaits as wiggling fish out of water when she moves, or seeing a dragon when he opens a hot oven.
Mr Foy has a guide dog called Mason, who he says keeps him safe and grounded.
In 2018, the retina in his left eye detached and, while he experienced some hallucinations as a teenager, they then increased dramatically and his brain would conjure all sorts of visions to fill the darkness.
Mr Foy said: “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 received 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.”
If you require more information or help from Guide Dogs, you can contact them on the Guide Line telephone service on 0800 781 1444 or visit https://www.guidedogs.org.uk/getting-support/