Supporting research into Charles Bonnet Syndrome
Esme’s Umbrella, a campaign offering support and information about Charles Bonnet Syndrome, is working with Fight for Sight to raise vital funds for medical research into the condition.
Esme's Umbrella was set up by Judith Potts. This is her story.
My late mother – Esme – suffered badly from Charles Bonnet Syndrome (CBS), so I know only too well the negative effect it can have on the sufferer’s life. I could not help her, but I am determined to help those who are coming after her.
CBS is a condition which develops in many people with low or no vision. It causes silent visual hallucinations, which range from disturbing to terrifying. People report seeing all sorts of ‘visions’ or ‘pictures’. Trellis-work, patterns or words which cover everything, animals, people (tiny or real-sized – often dressed in costume). Sometimes the whole room morphs into somewhere completely different, which is particularly disconcerting.
The hallucinations come from the brain, so they are sharp and clear – as opposed to the eyesight of the sufferer - which means that the teeth and saliva of a tiger or the waters of a fast-flowing river rushing through the room, are all too real.
There is no medication to alleviate the hallucinations nor any medical consultants. The sole researcher and globally-acknowledged expert in CBS is Dr Dominic ffytche of King’s London, Esme's Umbrella's medical adviser, from whom we know how the hallucinations are created.
We are hugely grateful for the support of the Help and Information Service, which runs our website and helpline 0345 051 3925 and to Fight for Sight for taking us under its auspices for our charitable fundraising.
Too few healthcare givers have heard of CBS and mis-diagnoses can occur. The only treatment we can offer is ‘reassurance’. Clearly, none of this is good enough and we need vital research to discover some basic data - like how many people in the UK are suffering from CBS – followed by the search for treatment and a cure.
Photo shows Judith speaking at the launch of Esme’s Umbrella at the House of Commons in November 2015.
Support Esme's UmbrellaMake a donation via JustGiving
Or send a cheque to Fight for Sight with Esme’s Umbrella written on the back.
More details about the condition can be found on Esme's Umbrella website.Visit Esme's Umbrella website