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A Chorlton mum who lost her sight three years ago is walking 100 miles in 10 days across Manchester to raise awareness of a syndrome that causes disturbing hallucinations but is often misdiagnosed as a mental health condition.
39-year-old Nina Chesworth started her walk on Friday 13th August in Sale Water Park, and will complete 10 miles every day before crossing the finish line in Chorlton Water Park on Sunday 22nd August.
She is tackling the distance to raise awareness of Charles Bonnet Syndrome (CBS) – visual hallucinations that can range from simple flashes of light, colours or shapes to more disturbing images such as disembodied faces and strange figures.
More than half of the two million people in the UK with sight loss will develop CBS but there is little awareness of the condition, either among health professionals or in the community, despite it being documented 300 years ago.
The lack of understanding can mean sufferers believe they are experiencing mental ill health, exacerbating the trauma and anxiety of losing their sight.
Nina will be joined on some of her walks by Coronation Street actor Richard Hawley, whose character Johnny Connor experienced hallucinations of mice, cockroaches and a ginger cat in a storyline in February this year when his eyesight deteriorated.
Born and bred Mancunian, Nina, who is still getting used to walking with a cane and travelling short distances, is challenging herself to complete 100 miles around south Manchester to raise vital funds for Esme’s Umbrella – the pioneering organisation for support, awareness and research around Charles Bonnet Syndrome.
The organisation helped her when hallucinations shortly after losing her sight gave her false hope that doctors had saved some of her sight and then added to the challenges of life as a blind person.
The RNIB and Esme’s Umbrella have recorded that the anxiety and isolation of lock-downs have exacerbated episodes of CBS and people’s hallucinations have become much more frightening.
“For me, the hallucinations are constant, from the moment I wake up to the moment I go to sleep,” says Nina.
“I see colours, shapes, patterns, blurred words, faces, characters, and then there are the scary ones, like animals with drooling snarling teeth, zombie faces with no eyes and blood dripping from the sockets.
“This is an incredibly common condition which affects people who have lost over 60% of vision yet you can count on one hand the number of CBS research projects.
“Much more medical, physical and psychological support is needed.
“Not only is there a lack of awareness and research, there is no pathway for diagnosis, treatment and support.”
Both Nina’s GP and specialist eye doctor had no knowledge of Charles Bonnet Syndrome.
“I am lucky in that I have a really supportive family who I can talk to and who can help me understand what I’m experiencing but so many people don’t,” says Nina.
“To think about people who have lost their sight and are experiencing CBS but going through it on their own and who wrongly believe they are experiencing a mental health crisis…I’m doing this walk for them.
“People with impaired vision and sight loss often experience severe isolation and depression but the last 18 months with COVID has made that so much worse.
“The times we are living in now – this awareness is more important than ever!”
“Just a diagnosis of Charles Bonnet Syndrome can help so much because it’s an acknowledgment of a real condition that you and those around you can start learning about and understanding,” said Actor Richard Hawley, who worked with Nina and Esme’s Umbrella to research CBS for the Corrie storyline.
“It can feel less lonely.
“Nina is a truly inspiring woman who’s determined to use her experience to help others.
“It’s an honour to join her for part of her walk.”
Nina was registered blind three years ago but has been visually impaired from two-years-old when she contracted the flu virus which damaged her vision.
Later on, in her twenties, an accident at work caused her to lose her right eye. She adjusted to life with one eye and went on to have her now 10-year-old son and set up her own business, a creative Cafe in Chorlton.
Then in a third and unrelated incident in 2018 she lost the sight in her remaining eye which meant complete sight loss.
She admits to experiencing extremely low periods shortly after she lost her sight but with the support of her family – husband Steve, son Dylan, her mum, dad and siblings – she has trained as a therapist and launched holistic therapy business, Five Senses Therapy, from her home in Chorlton last year.
“I have started on a wellness and self care journey,” she says.
“One of the things I find helps the severity and longevity of the hallucinations is exercise – regular yoga practice and walking.
“I want to show the world that sight loss is not the end and we can still do the things that bring us joy.”