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 knew my body better than anyone else. I learned to keep asking questions and always get a 2nd opinion.” Jac’s Cavernoma Story
My name is Jac Sinnott and I’m 39 years old. My cavernoma was located near my thalamus. I was diagnosed in July 2021 after hospitalisation following a bleed. I presented myself to the hospital with persistent symptoms which a couple of different GP practices said were migraines. Initially, my local hospital didn’t know what was causing my symptoms and it took a long time to get answers, especially as we were still in lockdown due to the pandemic.
My most recent symptoms appeared in late June 2021 and they presented as pins and needles down my left side as well as weakness and numbness on that side. I also had visual disturbances. Each episode would last for 30 minutes to an hour.
The Gut – Cavernoma Connection Emulsifiers and More with Dr. Shelley Stevens
Join Dr Shelley Stevens to discuss the gut-cavernoma connection, the impact of emulsifiers & more!
Dr Stevens is a toxicologist, and, being a mother of a child with brainstem cavernoma, Dr. Stevens has a special interest in the gut-cavernoma connection.
Steve Cairns – Recovering Movement Following Stroke & Brain Surgery, a New Perspective
Join host Steve Cairns as he talks about the changing face of Neuro Rehab and his case study with a Multiple Cavernoma patient.