Thank you for taking the time to visit my JustGiving page, set up by me, Judith Potts, the Founder of Esme's Umbrella (named after my Mother, for whom this condition tormented her final years) to raise money for research into Charles Bonnet Syndrome (CBS). This is a little-known but incredibly common condition, which can develop when sight is diminished or lost - from any one of the eye diseases, stroke, cancer, accident, diabetes, multiple sclerosis or another condition which damages the optic nerve. It is estimated that this distressing condition could affect up to one million people of all ages - children too - in the UK who are living with sight loss. 

CBS causes vivid, silent visual hallucinations, which range from disturbing to terrifying.  People report seeing trellis-work, patterns or words which cover everything, animals, people (tiny or real-size - often dressed in costume), gremlins, grotesque faces, children, animals, insects, worms, slugs, buildings, fire or water. Sometimes the whole room morphs into somewhere completely different, which is particularly frightening.

When sight is compromised or lost, the messages from the retina in the eye to the brain slow down or stop. However, the brain does not calm down. It fires up and creates its own sharp and clear images - so the teeth and saliva of a tiger, the details of the uniform worn by a soldier, or the waters of a fast-flowing river running through the room, are all too real.

There is no CBS-specific medication for the condition and Professor Dominic ffytche at King's College London is the only clinician - in the world - who sees patients. Too few ophthalmologists warn their patients that CBS might occur - it might not, but forewarned is forearmed.  The Royal College of Ophthalmologists has lent its support to the work of Esme's Umbrella and will ensure that all its members now explain about CBS. 

All too often people who live with CBS decide not to confide in anyone because they are concerned that the hallucinations are a precursor to dementia or another mental health condition.  If the person has not been diagnosed with a mental health problem and does not have severe memory loss, then the hallucinations will be caused by CBS - which is not a mental health condition.

CBS is unknown by far too many members of the medical profession and misdiagnoses can happen , resulting in people being ushered down the mental health pathway - sometimes on a one way ticket - which wastes the precious resources of the NHS and causes more distress.

My aims are to raise money for research, to raise awareness within the whole of the medical profession and out into the community and ensure that CBS is recognised as a serious side-effect of sight-loss, accepted as a proper medical condition and to create ways of helping people to live with the condition. Esme's Friends are telephone/online chat and support groups for people living with CBS and their families.

Esme's Umbrella is working with Fight for Sight, the UK's leading eye research charity, to raise vital funds for medical research into Charles Bonnet Syndrome (CBS).

The Money donated will go to Fight for Sight, which holds Esme's Umbrella's Restricted Fund and all of it will be directed towards research into CBS.  Fight for Sight works with independent experts who peer review research to ensure it funds the very best research with the greatest potential for impact.

In 2017, Fight for Sight, The Thomas Pocklington Trust and the National Eye Research Centre - in conjunction with Esme's Umbrella - appointed the first CBS researcher at Newcastle University.  The team is comparing the brains of people with sight loss and CBS against those who do not develop the condition. If we can identify the difference, we may be on the way to finding a non-medication, non-invasive treatment which is being researched at the same university. The work will add to that of Professor Dominic ffytche, who is the medical adviser to Esme's Umbrella and the sole, globally-acknowledged expert in CBS. In 2019, Professor ffytche was appointed the world's number one for all types of visual hallucinations and is Professor of Visual Psychiatry.

Current research is happening at the University of Oxford and the universities of Cardiff and Manchester. Moorfields Eye Hospital is conducting a prevalence study with the Oxford Eye Hospital and research into CBS and children. Already published is a research study by Professor Mariya Moosajee and Dr Lee Jones to prove isolation and stress exacerbate episodes of CBS and create images which are much more frightening. The Medical Detection Dogs are investigating whether or not a chemical is released into the brain before the hallucination appears.

Moorfields Bio Medical Research Centre hosted the online Esme's Umbrella's Patient Information Day in 2020 to which there were 600 attendees/delegates.

I am hugely grateful to The Help and Information Service (TH&IS) for its support in launching the campaign at the House of Commons in 2015 and for managing the first Helpline and the website.  TH&IS has also created the first information video about CBS in conjunction with the NHS and Health and Care Videos for all clinicians and NHS Trusts. 

I have persuaded the World Health Organisation to include CBS in its taxonomy of diseases and conditions, which now means that the NHS must spearhead research and a pathway for diagnosis, treatment and support - to stop the discrimination of people with live with this disturbing condition.

If you need help, support or would like to share your CBS experience and/or tell us of a coping strategy that works for you, please contact us via:

 * Website - www.charlesbonnetsyndrome.uk 

* Helpline: 020 7391 3299. Calls are answered by the RNIB’s Eye Health Team. Referrals for callers looking for peer support will be made to Retina UK, whose Helpline is answered by people with personal experience of Charles Bonnet Syndrome.

* Email: esmesumbrella@gmail.com

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