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Cavernoma Awares

“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…

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“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.

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“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.

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“My little boy reminds me that the future is bright” – Laura’s Cavernoma Story

31 year old airline captain Laura was diagnosed with a cavernoma in June 2022 just ONE DAY before the early birth of her now 4 month old baby boy Karl-William via C-section. Laura’s situation meant doctors had no choice but to perform brain surgery to remove a bleeding cavernoma shortly after the arrival of her baby.
Laura has kindly shared her cavernoma story to raise awareness of her condition and inspire others in a similar position.

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“I’ll always be on a journey” – Leanne’s cavernoma story

Leanne Gray was initially diagnosed with a cavernoma in her cerebellum which bled causing multiple symptoms.  She later discovered she has the familial (genetic) form of cavernoma and has since grown several more cavernomas all across her brain.  Leanne tells her story of how she has learned to cope with her condition and the uncertainties it brings and live fully and happily at the same time. 

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