To source funding for vital CBS research, Esme’s Umbrella has launches ‘Out of Sight but not out of Mind’ to raise awareness to caregivers of Charles Bonnet Syndrome, Please donate:
Josie Jackson Artwork inspired by
Charles Bonnet Syndrome
Marisa Fedee Artwork inspired by
Charles Bonnet Syndrome
Robert Bidder Artwork inspired by
Charles Bonnet Syndrome
Visual Hallucinations after sight loss
This is a condition called Charles Bonnet Syndrome (CBS), which can develop in someone of any age – children too – who has lost over 60% of sight. It causes vivid, silent, visual hallucinations which range from disturbing to terrifying. It is not a mental health condition, but caused entirely by loss of sight.
Not everyone with sight loss develops CBS but, for those who do, the condition can be distressing and debilitating – not least because it may be confused, mistakenly, with the onset of a mental health condition.
Far too many people who develop CBS have received no warning about the condition and, consequently, confide in no one.
Professor Dominic ffytche (King’s College London), who is medical adviser to Esme’s Umbrella, explains “From the moment we open our eyes, the nerve cells in the retina send a constant stream of impulses along the visual pathways, which are passed to the visual parts of the brain. If the retina is damaged, the stream of impulses reduces. Paradoxically, the response of the brain is not to reduce but, rather, to increase the cells firing and it is this increase that causes visual hallucinations”
Who was Esme?
Esme was Judith Potts’ mother.
Having trained as a children’s nurse at Paddington Green Children’s Hospital, Esme’s long working life was spent looking after people – from new born babies to school-children; as a welfare officer to nurses; and, in her seventies, stepping in to allow families a break from the responsibility of caring for an elderly parent.
Widowed in her thirties, with very little money – but with a 2 year old daughter – this typical Edwardian lady coped stoically with all life threw at her. She particularly loved children and relished time spent with her two grandchildren.
Resourceful and creative – her sewing machine always at the ready – she remained sprightly and lived an independent life, completing the Telegraph cryptic crossword every day. Glaucoma had been diagnosed when she was in her eighties, but it was when Charles Bonnet Syndrome struck that her life changed irretrievably.
Like too many others, she said nothing until she could bear it no longer. Her quality of life was being challenged and her fear of mental illness was paramount. By the time she finally confided in Judith about her ‘visions’ – faceless people on her sofa, a tear-stained Edwardian street child, a hideous gargoyle-like creature and sometimes the whole room morphed into an alien place – the hallucinations had reached constant and terrifying proportions. They remained with her for the rest of her life.
It seemed entirely fitting to name the CBS campaign after her.
Patron of Esme’s Umbrella
Richard Hawley is a British actor, best known for his work in Grushko, Prime Suspect, Family Affairs and Love Actually.
He is currently playing Johnny Connor in Coronation Street. Johnny developed optic neuritis from his MS, which caused Charles Bonnet Syndrome (CBS) to develop.
Following Richard’s moving portrayal of what it is like to live with CBS, Esme’s Umbrella’s Helpline received just under 1900 calls and Richard accepted the invitation to be Patron of Esme’s Umbrella.
Special Friend to Esme’s Umbrella
Nina Chesworth developed Charles Bonnet Syndrome in 2018 when she lost her sight. With a degree in Design and Art Direction from Manchester University – which she took, despite being visually impaired following a bout of flu when aged 2 – Nina opened Craft Café in Chorlton, Manchester.
As an adult, two accidents took the sight of both eyes, after which she re-trained as an holistic therapist, specialising in massage, meditation, aromatherapy and reflexology.
Her Five Senses Therapy is the result and her creative skills are still very evident in her therapy products and the jewellery she designs.
Nina is the Facilitator for Esme’s Friends’ chat and support group in Manchester.
She runs a support and social group for VI adults of working age and is a member of Thomas Pocklington Trust’s Sight Loss Council for Manchester.
She is married, with a son and a stepson.
Health Shared & Esme’s Umbrella
Esme’s Umbrella welcomes you to join the Charles Bonnet Syndrome Community at Health-Shared.com.
Helpful information for professionals and patients is included which is regularly updated.
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