Esme’s Umbrella’s new Campaign – ‘Esme’s Children and Young People’
Esme’s Umbrella logo – For everyone working for the greater awareness of Charles Bonnet Syndrome
At Esme’s Umbrella, we raise awareness of Charles Bonnet Syndrome (CBS) and support everyone who lives with this condition, their families and caregivers.
CBS is a condition that is triggered when a person, of any age, loses a variable amount of sight from any of the myriad eye conditions, a brain injury or another condition which damages the optic nerve or pathway. It causes vivid, silent, visual hallucinations but is not a mental health condition.
Since Professor Mariya Moosajee and Dr Lee Jones have proved prevalence of CBS in children, we are becoming more aware of just how many children and young people are living with the vivid, silent, visual hallucinations caused by the condition.
Do you support children and young people in your organization? If so, perhaps these quotes may be familiar to you:
- My child is seeing things that aren’t there.
- My child has been more reserved or distant and is waving and grabbing at things that are not there.
- My child has begun to refuse certain foods because they say there are things in them that are not there.
- My child is talking to things that are not there.
Conversely, you might like to use the quotes to gently ask families or caregivers if they have noticed any of these changes in their child or young person since their sight loss began.
We understand that children may not feel they can open up and share what they may be seeing, but it is important that parents or caregivers have the correct information and can take the lead, encouraging the child or young person to confide, knowing they will be believed and not judged.
As you work with children, young people and their families, we very much want to ensure that we keep you up to date with the rapidly changing developments in our understanding of CBS. There is more information on the Esme’s Umbrella website where you can also watch our short, animated film ‘Em’, which helps reassure children and gives them some understanding of CBS.
We hope that we can work together to raise awareness of CBS in children, young people and their families or caregivers. Together, we can find the right way to support them all.
Please click here to email Nina Chesworth, our Programme Coordinator for more information or a chat about working together.
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