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News

Lindsay’s Story: Cavernomas in the Brain and Spine, & CCM1

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.

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Lauren’s Story

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!

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Cavernoma Awareness Month

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.

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BECOME A CORPORATE PARTNER

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.

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SAVE OUR SERVICES – help CAUK raise £30,000 in their COVID-19 recovery fund.

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!

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Celebrating 20 Years of Angioma Alliance!

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.

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New Peer-to-Peer Support Opportunity!

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.

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