£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
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.
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.
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.
Whether you are a big company or a small business we would love to hear from you. Never had an office/company charity before? Choose CAUK as your fist!
Contact us today to help us raise awareness of our rare disease and support the cavernoma community.
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 sit down with the founder of popular, hero-inspired clothing company, Scamp & Dude, to talk about how shock diagnosis of cavernoma and emergency brain surgery has transformed her life, both personally and professionally.
PO Box 366
Watlington
Oxfordshire
OX10 1GF
Registered Charity 1114145
Scottish Charity SC048458
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