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My name is Cindy and I was diagnosed in 1996 with Neuro-Behcet's.
My journey started 1 year after having my son. (After 5 years of trying) My first major flare was when I was watching T.V. and all of a sudden I got this execrating pain in behind my left eye. It felt like someone had taken an ice pick, jabbed it into the back of my eye and started to push it out from behind. There was a lot of pressure. Then my left eye started to close and droop, followed by left sided numbness of my face. Also I started loosing sensations on the right side of my body along with weakness. I was taken to the hospital and then rushed to another by ambulance. They thought I had an aneurysm. I was sent for an angiography right away. This test turned up negative and I was told that I probably had a rare form of migraines. ( I had suffered from migraines since I was a teen but this was not my ordinary migraine). I was then sent home after my tests came back negative.
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Volunteers are our Greatest Assets
Vasculitis Foundation Canada is made up strictly of volunteers. They give so much of their energy and time while most are still having to deal with their own form of Vasculitis. From the onset, the running of a support group has to be a group project. When we began in 1998 with not-for-profit status, our goal was to reach out to the unknown patients and families who knew the challenge of a rare disease, Wegener’s Granulomatosis. Resources were the determination and strength of a handful of volunteers. The talents of each were brought to bear and the outreach plan was launched.
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