Cavernoma Awares

The CARE trial’s first active treatment participant, 10 year old Elise, shares her story of successful cavernoma brain surgery.

Elise was diagnosed with cavernomas at just 1 year old, a year a
fter her mother Suzan’s initial diagnosis. After learning to walk and talk, and achieving the typical developmental milestones you might expect of any infant, out of nowhere Elise began to regress. She had suddenly lost all of her acquired skills and Suzan noticed that she was frequently holding her head and screaming in pain.

September 6, 2022

It’s almost time for our 9th annual CaverFamilies Residential!

We are so excited to be packing our bags and getting ready for our 9th annual CaverFamilies Residential this weekend!
Our annual three-day residential retreat is a unique opportunity for families affected by cavernoma to connect, share experiences and spend some good fun, quality time with people who truly understand each other.

August 24, 2022

Top Tips for Travel Insurance with Cavernoma

Travel insurance is about more than claiming money back from a flight delay or lost luggage; it exists to ensure that you can afford proper

July 25, 2022

Top tips to manage your cavernoma during the heatwave

The government has issued a Level 4 alert in anticipation of some of the hottest temperatures ever recorded in the UK, with highs of 40° possible in parts of England.

Many of you will already be feeling the effects of the soaring temperatures. Unlike many Brits who welcome the heat, those with cavernoma often find that hot weather worsens their symptoms and makes their condition even harder to mangage.

July 18, 2022

Pete’s Cavernoma Story – An incidental finding

My name is Pete and I have a left temporal Cavernoma. This was found as an incidental finding after an MRI for another reason. There is much more to my story and so I shall start at the beginning.

July 18, 2022

£5000 from The Edinburgh Neurology Fund!

We are really happy to announce, however, that we have been awarded a very generous sum of £5000 from The Edinburgh Neurology Fund, part of NHS Lothian Charity.

July 11, 2022

Vera’s Story

Almost her entire life Vera had been experiencing focal epileptic seizures many times a month and was completely unaware of what it was. Now, one year later, she waiting for a date for major brain surgery.

June 30, 2022

Debbie’s Story: My Family & Cavernoma

Debbie shares her open and honest account of her family’s journey with cavernoma – focusing in particular on her teenage daughter Libby who was diagnosed with cavernoma and had brain surgery aged 13.

June 27, 2022

NEW INFORMATION LEAFLETS: Join our #ShareAndMakeAware Campaign

The team at CAUK, along with our medical advisors, have been working behind the scenes to create brand new Public Information Leaflet (PIL), with the aim of educating patients, clinicians and the general public about cavernoma.

June 27, 2022

Pat’s Story

Pat tells the story of her journey with cavernoma, from initial diagnosis of epilepsy, the discovery of her multiple cavernomas and her eventual surgical resection. She talks about what has helped her cope through the years and emphasizes the importance of support and patience.

June 22, 2022

Membership

Donate

Contact Us