Latest News
Updated guidance from DVLA on driving & cavernoma
Thanks to member feedback, and discussions with clinicians, it was brought to our attention that the advice DVLA’s advice to patients with cavernoma was different to it’s advice to clinicians. Earlier this year, we got in touch with DVLA to query their guidance on the rules around driving with cavernoma.
‘Cavernoma stories’ short films
In 2023 Cavernoma Alliance UK was approached by a filmmaker who has cavernoma, Lucy Gohm. After her own experience with the condition, Lucy come to us in the hope that we could help her use her skills to amplify the voices of the cavernoma community by interviewing people with cavernoma and sharing their stories. The result: two beautiful short films, featuring Emily and Sacha, and their stories of temporal-lobe and brainstem cavernoma respectively.
CAUK ANNUAL FORUM – this Saturday 24th June!
This year we’re really excited to be bringing you speakers from the UK and US who are global experts on cavernoma. Whether you are newly diagnosed or have been living with cavernoma for some time, we hope you’ll find these talks interesting and helpful.
Latest Blog
“Pleased to meet you, I exist” – Flavia’s Cavernoma Story
In September 2021 I was diagnosed with cerebral cavernoma – a benign tumor in the right temporal lobe – and was told that this tumor had been with me since I was born.
“Five pieces of advice I would give to someone ahead of brain surgery…” Noellie’s Cavernoma Story
My cavernoma was located on right temporal lobe. I was diagnosed on 27th July 2022. My symptoms mainly included severe headaches that the Doctors (GPs, Neurologists) said were episodes of migraine.
Epilepsy and epileptic seizures from brain cavernoma
When people present with symptoms that lead to the diagnosis of a brain cavernoma, half of the time it’s due to one or more epileptic