Janet Bunch has been part of our volunteer peer-support scheme, CaverBuddy, for many years. She tells us about why she became a CaverBuddy after her own diagnosis and what supporting others with cavernoma means to her.
Carly shares her story of how her persistent headaches led her to an eventual cavernoma diagnosis, despite several dismissals that her pain was ‘just a migraine’.
Tash tells her story of discovering a cavernoma bleed, during lockdown, just months after surgery for an unrelated spinal condition. She discusses her difficult journey to diagnosis, lack of communication from her doctors and how she managed telling her friend and family about her diagnosis.
When we last heard from Vera back in June she was waiting for a date for surgery to remove her cavernoma. Fast forward a few months and Vera is now recovering from this major surgery. She has kindly shared an update, detailing her experience of neurosurgery.
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.
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.
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.
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
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.
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.
PO Box 366
Watlington
Oxfordshire
OX10 1GF
Registered Charity 1114145
Scottish Charity SC048458