Jenniffer’s Story

My name is Jenniffer and I have been recently been diagnosed with CCM disease, I have had seizures since I was 14 years old. My first brain bleed was found about 2007, then in 2011 I had my first brain surgery to remove a cavernous angioma. Fast track to now, I was finally diagnosed with…

Lola’s Story

My story, is actually my Granddaughters story! At the very young age of 3 months, I realized she was having seizures. My daughter, who has epilepsy, is the reason I recognized the seizures. I called my daughter and brought the baby to the ER. There we demanded that they do a CT on my Grandaughter. The…

Amy’s Story

Growing up I remember instances of severe head pain as far back as elementary school that self resolved. Years later I became a Nurse and worked in the Emergency Department. I helped care for patients with migraines but somehow remained stubborn in getting my own headaches evaluated. At times I would come home from work…

Jensen’s Story

When I was 13, I started having severe migraines and blurry vision. After an MRI they stated I had a venous angioma, that probably wasn’t what was causing the issues. My doctor basically said there was nothing she could do. Three years later, while in class, I had blurry vision again. I did not think…

Patti’s Story

I too am a cavernous malformation survivor. I was 43 years old, on New Years Eve 2007. I started the day feeling sick and dizzy. By that afternoon I could not stand, talk, walk or visually focus on anything. I had severe headaches for several years but I attributed them to my hectic work schedule…

Katelyn’s Story

I can definitely say my life has not been the same since the evening of March 1st, 2020 when I was sitting in my college dining hall with my two best friends and I began to see flashes in my eyes and my legs went completely numb. My gut instinct knew something was wrong so…

Sharon’s Story

Sharon’s inspirational story of life beyond cavernous malformations: On Friday, Dec 5th, 2014 at the age of 42, I came home from work and as I sat on the couch I noticed a funny feeling in my back. By Sunday night I was in pain like I had never felt. I could not sleep and…

Deb’s Story

Deb’s inspiring story of turning her struggles into an award-winning book: In Fall 2006, when I was 46, I was diagnosed with multiple cavernous angiomas—I’d experienced fleeting symptoms (dizziness, vertigo, loss of balance, numbness and tingling in my left arm) which only lasted a couple of days. Apparently, two of the angiomas had bled. A…

Jordan’s Story

Jordan’s story of strength and hope: In 2006, during my 2nd year of college I was diagnosed with epilepsy. It started out as absence seizures, daydreams. Once I knew what was going on it all made sense. How all those years prior in classes I’d miss out on key info. Likely the cause of the…

Heather Gross

Here’s Heather’s Inspiring Story: When I was a 22-year-old college student, I had a random brain hemorrhage caused by a Cavernous Angioma on my right Thalamus. There was no known treatment and the only cure was brain surgery but my lesion was too deep in my brain to reach safely so the doctors told me…