Latest News
‘Oral Contraception, HRT and Cavernoma’ webinar with Dr Zuurbier, 28th March 19:30 GMT
Join our March webinar on ‘Oral Contraception, HRT and Cavernoma’. We’re really pleased to share that on Thursday the 28th of March, Dr Susanna Zuurbier
‘‘The Spinal Cord and Cavernoma’ webinar with Mr Daniel Walsh, 21st February 19:30 GMT
Join our February webinar on ‘The Spinal Cord and Cavernoma’. We’re really pleased to share that on Wednesday the 21st of February at 19:30 GMT,
Brain Awareness Week, 11th-17th March 2024
We’re thrilled to announce UK wide in-person meet-ups for Brain Awareness Week, 11th – 17th March 2024. These meet-ups will be hosted by our incredible
Latest Blog
“The mental strain of knowing you have so many of them that could bleed at any time is torture” – Diane’s Cavernoma Story
In October 2022 I had a fall out of bed; I bumped my head quite hard on my bedside table and had a nasty lump on the side of my head (I am so clumsy!). A few days later I started having bad dizzy spells especially at night and when I laid down. One night, I got up to use the bathroom and I blacked out. I just thought I had concussion from the bump…
“This really is every mum’s worst nightmare but I know both my boys are so strong and we can get through this as a family” – Lyndsey’s Cavernoma Story
I was first diagnosed with my Cavernoma when I was 18.
I was out shopping and felt completely normal – the next thing all I could see was the bottom of a clothing rail. It then felt like I was opening and closing my eyes continuously. I realised I was in an ambulance, and I then remember being rushed down a hospital corridor, then to a hospital room.
“The thought of having brain surgery was really scary especially as I was expecting a baby in just a couple of months” Jake’s Cavernoma Story
My name is Jake Mellor, I am 31 years old and had a right frontal lobe symptomatic cavernoma. Here is my cavernoma story….
I had a seizure on the 24th of September whilst I was getting into bed to watch TV. My partner found me on the floor with blood on my face (I had bitten the inside of my mouth), I was sweating, very confused and couldn’t walk or talk properly. The next day I took my blood pressure which was extremely low, and I generally felt unwell. I originally thought it was due to stress and tiredness with having my own carpentry business, but I couldn’t shake it off so on Monday the 26th of September I ended up in hospital at A&E.