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 plagued her final years) to raise money for research into Charles Bonnet Syndrome (CBS), a little-known and understood - but incredibly common - condition which can develop when sight is diminished or lost. It is estimated that this distressing condition could affect up to three-quarters of a million people 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 does the opposite, 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 medication for the condition and no medical consultants/specialists. Too few ophthalmologists have been warning 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 warn their patients.
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.
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.
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 and accepted as a proper medical condition and to find ways of helping people to live with the condition.
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).
Money donated will go to Fight for Sight and 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 and The Thomas Pocklington Trust - in conjunction with Esme's Umbrella - appointed the first researcher. Dr Greg Elder, at Newcastle University, will focus on discovering why some people with sight loss never develop the condition. He will compare the brains of people with sight loss and CBS with those who have similar sight loss but no hallucinations. His work will add to that of Dr Dominic ffytche of King's College, London, who is the medical adviser to Esme's Umbrella and the sole, globally-acknowledged expert in CBS.
Moorfields Eye Hospital will be hosting the first-ever CBS Patient Study Day in 2018.
Esme's Umbrella is 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 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. The Helpline now offers a dedicated service to gather specific information from sufferers, which will be fed into any research carried out by Dr Dominic ffytche and the first research programme to be funded by Esme's Umbrella at Fight for Sight.
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:
* our Website - www.charlesbonnetsyndrome.uk
* our 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.
* our Email: firstname.lastname@example.org
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