JUDITH’S UPDATE FOR APRIL 2017
My Campaign to raise awareness of CBS is galloping along, sometimes with me desperately trying to keep up! There has been the occasional day when I wondered what on earth I thought I was doing starting such an enterprise – particularly as CBS is so little-known within the medical profession and has neither medication to alleviate the silent visual hallucinations nor medical consultants - but then I remember all those for whom CBS is a hidden torment and I continue to climb the mountain.
Having written on many occasions in my Telegraph Column about the need for charities in the same field to work together and not compete, I have been overwhelmed by the help and support offered to me from charities in the sight-loss world.
InfoSound – the charity which produces and distributes free and relevant information in audio format for the benefit of vision-impaired people - recently included Esme’s Umbrella and CBS in one of its broadcasts. This follows the syndication of the interview I gave to Merton Talking Newspaper. I know just how much these two broadcasts have helped raise awareness, because they are mentioned by callers and emailers.
The interview I gave to the magazine, ‘Take a Break’, has resulted in a huge increase in calls and emails. So many people have spoken of their relief to know they were not alone with the condition but, also, of their astonishment at the lack of GPs’ awareness of CBS; not to mention their disappointment that there is no medication available. However, since the publication of the interview, I have had endless offers of support from sufferers or from their family members who are keen to help spread the word.
Daunted by the prospect of turning my one-woman campaign into a charity – but realising the inevitability of doing so if Esme’s Umbrella was going to fundraise for vital research into CBS – I was thrilled to receive an offer from Fight for Sight, which is the leading UK charity dedicated to pioneering eye research to prevent sight loss and treat eye disease.
Under its auspices, Esme's Umbrella can now raise funds directly on its website via Fight for Sight or on our Just Giving page and the money donated through Fight for Sight will be specifically directed towards research into CBS. Fight for Sight works with independent experts who peer review research to ensure it funds the very best with the greatest potential for impact.
In July this year, we will be able to put out a call for a researcher. There is precious little data on CBS - we do not even know how many people have the condition - so the scope for research is more than wide-ranging. Dr Dominic ffytche of King’s London – Reader in Visual Psychiatry - is not only my inestimable Medical Adviser but also the sole, globally-acknowledged expert in CBS. He will be closely involved in the new project.
CBS is beginning to be depicted or illustrated by writers and artists. Gareth Brookes has just published ‘A Thousand Coloured Castles’, a graphic crayoned novel which – as Dr ffytche describes in his endorsement - ‘perfectly conveys Myriam’s fading visual world and the episodic nature of her experiences. Her story will help others understand what the experience is like and why someone might hesitate to talk about it. Perhaps more importantly, it will help those affected reveal their own, personal visual adventures for the first time.
The small steps of care which I have been able to make daily to a caller or emailer – suggesting coping strategies; putting one sufferer in touch with another; identifying a low-vision group who would understand and welcome a CBS sufferer; or finding an ECLO or ROVI to give the necessary reassurance – are just the beginning of a support plan. Information about CBS is making its way through the UK.
An important date for your diary – The first Charles Bonnet Syndrome Day/Esme’s Umbrella Day is 16th November 2017. #CharlesBonnetDay