CBS is a misunderstood and often frightening condition experienced by many people with sight loss, including children and young people. It causes vivid, silent, and often distressing visual hallucinations in people with sight loss. Long believed to affect only older adults, research now shows that children are also deeply impacted — often in silence and without support.
Recent studies led by Professor Mariya Moosajee and Dr. Lee Jones have shown that children with sight loss may experience terrifying hallucinations — from insects crawling on their beds to monsters and witches — often without telling anyone. Awareness and early conversations can make a huge difference.
As Professor Dominic ffytche (King’s College London) has found, simply being told about CBS before symptoms appear leads to far better outcomes.
It’s time to shine a light on CBS in young people.
Together, this session will:
- Explain what CBS is and how it affects people of all ages
- Share real-life experiences from individuals living with CBS
- Offer a chance to ask questions to professionals and those with lived experience
- Highlight the latest research and the urgent need for awareness in children and young people
- Provide information on support available for families, carers, and professionals
The session will be led by LOOK’s Events Manager, Elin Williams, and Esme’s Umbrella Programme Coordinator, Nina Chesworth. They will be joined by a panel of four speakers, including professionals, parents, and young people with first-hand experience of Charles Bonnet Syndrome (CBS). Each panellist brings unique personal or professional insights to help you better understand CBS — whether you’re living with it, supporting someone who is, or simply want to learn more.
The panel discussion includes plenty of time for a Q&A, so please be sure to include your questions in the registration to be addressed by our panel of experts.
After the event, we will share detailed resources as well as a recording of the panel talk to listen back to and help you every step of the way.
You’ll need to register for the session before 11 am on the day of the event. This deadline is in place to help safeguard our online events. If you miss this deadline, please contact info@look-uk.org on the understanding that we cannot guarantee your participation.
Please note that, due to limited capacity, this event is intended for parents of visually impaired young people. Resources will be made available after the event for professionals who wish to learn more about Charles Bonnet Syndrome (CBS).
Don’t miss this chance to gain expert advice, ask questions, and connect with other parents and carers! Sign up today!
This session will be recorded and published on podcasting platforms, so if you contribute during the session, you consent to appear in the recording.
Meet the Event Facilitator
Elin Williams – LOOK Events Manager
I am the Events Manager at LOOK. I started as a volunteer mentor, sharing my lived experience of visual impairment with others. I am registered blind due to Leber’s Congenital Amaurosis and Nystagmus. I use Braille and a screen reader, and currently have only light perception.
I experience Charles Bonnet Syndrome (CBS) as flashing colours and lights in my vision. Looking back, I think I may have experienced CBS as a child while losing my sight, though I didn’t know what it was or have the words for it at the time.
I grew up with sighted parents, siblings, and extended family. Now, I live at home with my husband, who is also blind, our guide dog, and our chaotic cat.
Meet the Event Speakers
Dr Bethany Higgins
Dr. Higgins is a dedicated researcher with a PhD in Optometry and Visual Sciences from City St George’s, University of London. Her doctoral research focused on optimising methodologies for analysing dark adaptation data, with a keen interest in advancing our understanding of visual function. As a post-doctoral researcher, Dr Higgins has built a diverse research portfolio spanning vision science, neuroimaging, and digital health technologies, contributing to key innovations in the field.
Dr. Higgins has a strong international presence, having collaborated with institutions such as Dever’s Eye Institute in Portland, USA, and Seirei General Hospital in Hamamatsu, Japan. Her expertise extends to managing cutting-edge research projects, including studies on genotype-phenotype relationships in retinal diseases, the impacts of Charles Bonnet Syndrome, and the potential of digital phenotyping to transform patient care. She is passionate about applying her scientific expertise to improve patient-centred care, and she actively engages in research that promotes gender equity and inclusivity in healthcare.
Dr Lee Jones, BSc, MRes, PhD, MBPsS
We would like to extend a huge thank you to Esme’s Umbrella for sharing their time and expertise in this session.
If you or a family member has been affected by CBS and want further support or information, please visit the Esme’s Umbrella website.
