Latest 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.

Read More »

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!

Read More »

Latest Blog

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.

Read More »

Pat’s Story

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.

Read More »