Membership

Join CAUK today

Donate

Support CAUK today

Contact Us

Phone or email

Blog

“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.

Read More »

“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. 

Read More »

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.

Read More »

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. 

Read More »