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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

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raised by 8 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.

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.

With the support of The Help and Information Service (TH&IS), I launched Esme's Umbrella - named after my late Mother - in November 2015 at the House of Commons to raise awareness of CBS, from which she had suffered and for which we could find no help.

This distressing condition affects many people with low or no vision.  It causes silent visual hallucinations, which range from disturbing to terrifying.  People report seeing trellis-work, patterns or words which cover everything, to animals, people (tiny or real-size - often dressed in costume), gremlins, children, insects, worms, slugs, buildings or water. Sometimes the whole room morphs into somewhere completely different, which is particularly disconcerting.

The silent visual hallucinations come from the brain, so they are sharp and clear, which means that 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.  All too often sufferers decide not to confide in anyone because they are concerned that the hallucinations are a precursor to dementia.  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.

Too many people are suffering - some in silence - and too few members of the medical profession have heard of the condition. My aim is to raise awareness within the whole of the medical profession and out into the community. 

Esme's Umbrella is hugely grateful to TH&IS for its support in, not only managing the Helpline and the website, but for also creating the first information video about CBS in conjunction with the NHS and Health and Care Videos for all clinicians and NHS TrustsThe 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: 0345 051 3925 (answered 24/7 365 by the Help and Information Service)

* our 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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