I have a rare brain disease called cavernous angiomas which causes berry-like lesions in my brain to bleed from time to time. My first bleed happened when I was nine years old. I’m now 36 and with my cavernous angiomas I usually get a small bleed somewhere in my brain now and then, usually a good amount of time in between. Blood causes problems with how to move, think, understand, use word recall. Concentration on any of these things puts strain on your brain and causes headaches and weird brain and body pains. I find the words blunt, burning, muscle pain, nerve pain, sharp, and stinging to be the most helpful when describing these brain pains.
I’ve built a strong and hard won foundation of tolerance and trust in who I am as a patient and as a person in spite of cavernous angiomas. I have accomplished things I never thought possible before and I want it to continue. I want take my power back by fighting for a cure. This is what the Angioma Alliance‘s Anywhere Walk is all about. My fellow survivors and our friends and family walk for a cure. We ask to be sponsored for a 5k walk to raise money so that officials can use science to move forward in the effort to create help for us and a probable cure. Please would you support me.