Brain disease

The story of Kristen

I have Cavernous Angiomas. This is an ultra rare disease that causes raspberry-like lesions that ooze blood the brain. The people that have this disease have been to medical hell and we know what it looks like. I have  been to medical hell and it’s torture, bloody, ugly, and it looks a whole lot like this 3T MRI scan of mine. I’ve had paralysis, 6 brain surgeries, 3 major bleeds, too many cumulative bleeds to count, and too many Cavernous Angiomas to count. My name is Kristen Fowler. 

 

They first found out that I had this when I was nine and had a bleed in the pons of my brain stem. I am now 36 and somewhat of a veteran. I have numbness, pulsating throughout my body, often cannot think straight, pain throughout my body, trouble sleeping, a cyst in my c-spine, dopiness, weakness in my body, different types of seizures such as; out-of-body feelings. Day to day I get a mix match of all of these and rarely barely any. This is made harder by the fact that if they go to take a cavernous angioma away via surgery, the Angiomas grow back and sometimes multiply. This is a forever disease that will never go away.