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!
Our sister organisation in the US celebrates 20 years today! We wanted to say a huge congratulations to the team for all that they have accomplished and contributed to care and research, and to the international cavernoma community.
We’re looking for patients, family members or carers affected by cavernoma to join our peer-to-peer support scheme, “CaverBuddies”.
Our next CaverBuddy training will be held for members of CAUK via Zoom on May 19th at 2pm.
Welcome to the team Iona! This role forms part of our CAUK Pilot Internship Scheme, a programme designed to provide a productive work experience opportunity for young people with cavernoma.
Have your say: Acquired Brain Injury (ABI) call for evidence. The government is making a new plan about how to better support people with Acquired Brain Injury (ABI) or other neurological conditions – like cavernoma. They are asking those affected, and their families/carers, for thoughts and ideas on which they can build.
PO Box 366
Watlington
Oxfordshire
OX10 1GF
Registered Charity 1114145
Scottish Charity SC048458