Fight for Sight, Thomas Pocklington Trust and Esme’s Umbrella are funding vital research into Charles Bonnet Syndrome
Today [Thursday 16 November 2017] is the first ever Charles Bonnet Awareness Day and Fight for Sight has partnered with Thomas Pocklington Trust and Esme’s Umbrella to award a £15,000 grant to fund important research into Charles Bonnet Syndrome (CBS).
CBS is a serious side effect of sight loss. It produces vivid, silent, visual hallucinations which range from disturbing to terrifying. More than 100,000 people in the UK are thought to have CBS - and it could be as many as three quarters of a million - but people are not daring to confide in their GP, family or friends, because they are afraid the hallucinations herald a mental health issue. If there is no serious memory loss nor any other diagnosed mental health issue, then the hallucinations are caused by CBS.
Currently, there is no treatment for CBS - except reassurance - which makes support for research all the more important.
The team at the University of Newcastle upon Tyne - led by Dr Greg Elder - will investigate the differences in brain activity between people whose sight loss gives them visual hallucinations and those, with the same sight loss, who do not hallucinate. The aim is to better understand the condition and discover ways to prevent the hallucinations, with the development of treatment or medication.
Thomas Pocklington Trust’s Research and Policy Director, Phil Ambler, said: “We are delighted to be working in partnership with Fight for Sight in co-funding this valuable research with the support of Esme’s Umbrella. Charles Bonnet Syndrome affects many people with sight loss. This research is an important step in the journey to better understanding the condition and in helping those individuals.”
Judith Potts launched Esme's Umbrella in memory of her Mother who experienced severe CBS. Judith said: "For too long, CBS has been a well-kept secret. Esme's Umbrella is working to raise awareness of the condition with healthcare professionals and out into the community. Now - with the support of Fight for Sight and Thomas Pocklington Trust - one of the myriad of questions that surrounds CBS will have a chance to be answered by Dr Greg Elder and his team. This is a great step forward in much-needed research.”
Fight for Sight’s CEO, Michele Acton, said: “We are delighted to have established this partnership so that we can begin to tackle CBS, a severely underfunded and unrecognised condition. Little is known about the condition, which makes research like this vital.”
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Notes to editors:
Fight for Sight is the leading UK charity dedicated to funding pioneering research to prevent sight loss and treat eye disease.
Fight for Sight’s overall research commitments amount to £8m for over 159 research projects at 44 different universities and hospitals across the UK.
Fight for Sight is funding research to stop sight loss caused by both common and rare eye diseases and conditions. These include age-related macular degeneration, glaucoma, diabetic retinopathy, inherited eye diseases and the causes of childhood sight loss. Research that has been funded by Fight for Sight has resulted in:
• the identification of new genes responsible for glaucoma, retinitis pigmentosa, keratoconus and other corneal disorders, and Nance-Horan syndrome
• the world’s first clinical trial of a treatment (a gene therapy) for choroideremia, an inherited condition that causes blindness in men
• the design of a new test that can detect the early stages of sight loss in age-related macular degeneration
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