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
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.
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.
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.
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.
In 2011 I had a bleed from a Spinal Cavernoma. At the time I had never heard of this rare disease. I had never had any health problems. My symptoms started with a tingly feeling down my left leg. I also went for a bath and my left leg didn’t feel the temperature. I was diagnosed with 1 Cavernoma in my spinal cord and 3 small Cavernoma’s in my brain.
Lauren was diagnosed with cavernoma in her lower right cebellum after suffering multiple debilitating migraines. She was forced to have brain surgery which was successful. Lauren suffered a lot emotionally but was able to go back to her degree and, just last year, she took a leap set up her very own Performing Arts studio. An inspiration!
Cavernoma is a rare condition for which research is relatively young. Most people haven’t heard of Cavernoma until they, or someone they know, is affected. Being diagnosed with a condition you have never even heard of makes this difficult time all the more daunting and overwhelming. The more we share about Cavernoma and our experiences of Cavernoma the better the quality of care and support we can offer those affected in the future.
Join our monthly Cavernoma community catch-up for an opportunity to meet, share and learn from others who can really understand you and what you’re going through.
The Covid-19 pandemic has played a significant role in radically reshaping the work we do. Our team has worked tirelessly to respond to the crisis, and we’ve been able to successfully adapt and expand our services to cater for the growing number of people seeking information and support. Demand for our services is higher than ever, at a time where saturation of applicants means it has become is more and more difficult to secure funding. We need your help!
In honour of her father who was diagnosed with cavernoma, Sonia is taking part in a Tough Mudder event to raise funds and awareness for cavenroma and CAUK!
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Dorset
DT1 1ST
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Scottish Charity SC048458
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