In 2023 Cavernoma Alliance UK was approached by young filmmaker Lucy Gohm. After her own difficult journey with the cavernoma, Lucy came to us in the hope that we might help her use her skills to amplify the voices of the cavernoma community by telling their stories. Earlier this year she began filming members Emily Fletcher and Sacha Bonsor, exploring what cavernoma meant for them and their lives.
The result: two beautiful and thought-provoking short films.
Our ‘Cavernoma Stories’ short films are now available to watch below.
You can also find them, alongside lots of other video content, on our Youtube channel.
Emily’s Story – left temporal lobe cavernoma
Sacha’s story: brainstem cavernoma
About the filmmaker
Lucy Gohm, 29, is a videographer – originally from Austria – who, until recently, had never heard of cavernoma. Whilst on holiday in Indonesia Lucy had a seizure in her sleep and was unresponsive for 45 minutes. An MRI scan showed that Lucy had a cavernoma, and she was flown back to Austria to have it surgically removed. After a 2-month recovery period, Lucy slowly returned to work.
As she grew stronger, Lucy wanted to give something back to CAUK and the cavernoma community, from whom she’d received invaluable support through her own journey. Lucy’s idea was to use her skills to amplify the voices of her fellow cavernoma community by telling their cavernoma stories. Her goal was to share not just the experiences of diagnosis, symptoms and surgery, but to highlight how having cavernoma can shape entire lives and what it means for people day to day.