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Judith Potts

Judith's page for Esme's Umbrella.

Raising funding for Charles Bonnet Syndrome (CBS) for Fight for Sight because CBS is an 'orphan' condition which needs research

£5,090.77
raised by 59 supporters
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Fight for Sight

We fund pioneering research to prevent sight loss and treat eye disease

Charity Registration No. 1111438

Story

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 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 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 medication for the condition and no medical consultants/specialists.  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.

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.

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 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).

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 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. In 2019, Dr ffytche was appointed the world's number one for all types of visual hallucinations. He is Reader in Visual Psychiatry.

Moorfields Eye Hospital hosted the first-ever CBS Patient Study Day coincide with CBS Awareness Day on 16th November 2018. The world's first CBS Information Day was held in York in April 2019.

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

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

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