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, 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.
Founder of Esme’s Umbrella
Judith was an actor and a voice, acting and presentation coach.
She wrote plays and recitals for young children; trained child and young actors in voice and characterisation and aught the London Academy of Music and Dramatic Art examinations syllabus.
She trained senior executives from all areas of industry and the city in the art of presentation, using the skills of the performing arts.
For nine years she wrote a Health Column for The Telegraph. Her subject was cancer – following a diagnosis of breast cancer – and the work of the health charities. When her mother, Esme, developed Charles Bonnet Syndrome, the condition became an important part of her Column.
She is married with two children, three grandsons, three step-children, five step-grandchildren and a border collie.
Professor Dominic ffytche BSc MBBS MD MRCP MRCPsych
Medical Adviser to Esme’s Umbrella
Professor ffytche is an academic old age psychiatrist with a special interest in visual perception and its dysfunction. He is Professor of Visual Psychiatry at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London – the only such post in the world – and Consultant at the Maudsley Hospital, where he runs a national specialist clinic for Charles Bonnet Syndrome and other visual perceptual disorders.
He has published extensively on clinical and neuroscientific aspects of visual hallucinations and is the sole, globally-acknowledged expert on Charles Bonnet Syndrome. He was Principal Investigator on the NIHR-funded SHAPED programme (Study of Hallucinations in Parkinson’s disease, Eye disease and Dementia).
Professor ffytche has been named as the number one expert in the world for visual hallucinations.
For links to some of Professor ffytche’s CBS research articles, please click here
- VisionaryVisionary is the membership organisation for sight loss charities.
- Sight Research UKhttps://www.sightresearchuk.org/ Sight Research UK funds research into sight-threatening conditions in the UK.
- Blind Veterans UKhttps://www.blindveterans.org.uk Blind Veterans is a support and research charity for ex-servicemen and women of every generation.
- RNIBwww.rnib.org.uk Royal National Institute of Blind People offers information, support and advice. The Eye Health Team answer Esme’s Umbrella’s Helpline – 020 7391 3299
- Macular SocietyThe Macular Society offers a 6-week telephone support group for people with CBS (no matter what has caused their sight loss) and one-to-one CBS Buddies, or counselling, for people who would like to speak to someone who has experienced CBS. https://www.macularsociety.org
- Retina UKRetina UK supports people affected by inherited progressive sight loss and invests in medical research. CBS Buddies are available.
- Thomas Pocklington TrustThomas Pocklington Trust supports blind and partially sighted people of all ages to live the life they want to lead. Focusing on Education, Employment and Engagement, it funds a broad range of projects that support the delivery of positive outcomes for blind and partially sighted people across the UK. pocklington-trust.org.uk
- Gene Visionhttps://gene.vision/ Genevision is a resource on rare genetic eye disorders for everyone.
- Fight For Sighthttps://www.fightforsight.org.uk Fight for Sight leads the way in pioneering research to stop sight loss. Esme’s Umbrella’s Restricted Fund is held by Fight for Sight and the money collected goes entirely to CBS research – www.justgiving.com/fundraising/EsmesUmbrella
Most recent blog posts
Professor ffytche has been named as the number one expert in the world for visual hallucinations. Links to some of Professor ffytche’s CBS research articles: Research into factors associated wit…
Thomas Pocklington Trust is currently funding a research project to investigate the incidence of CBS in children. This podcast features Judith Potts, founder of Esme’s Umbrella, Professor Mariya…
Nina is going to walk from Exeter to Lands End in 7 days, starting on 14th August to raise money for Charles Bonnet Syndrome awareness and research – https://www.justgiving.com/crowdfunding…