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
“I really didn’t know what fatigue felt like before I had this bleed” – Hope’s cavernoma story
In June 2021 I had a sudden onset headache; the only way to describe it is that it felt like a sharp stab to the back of my head. The headache lingered for a couple of days, alongside other symptoms, like the feeling of running water down my legs and twitching in my right eye.
“If you know that someone is only a phone call or email away, it’s a bit like having a safety blanket in place” Janet’s CaverBuddy story
Janet Bunch has been part of our volunteer peer-support scheme, CaverBuddy, for many years. She tells us about why she became a CaverBuddy after her own diagnosis and what supporting others with cavernoma means to her.
“To be able to say I’m not even a year on yet, and I’m walking/talking again…is a massive bonus.” Carly’s story
Carly shares her story of how her persistent headaches led her to an eventual cavernoma diagnosis, despite several dismissals that her pain was ‘just a migraine’.