Seizures

Seizures My Story

I have had a long history of seizures ever since I was very young. I started having seizures at the age of 8 months old. My parents took me to The University of Michigan hospital where I was diagnosed with Canavan Disease which is a form of Leukodystrophy. My supposed to live past age five. Livinparents were told that I was not g with Canavan Disease was very hard, this disorder not only cause seizures, it also cause my head to swell which made me look strange to others. Basically my head looked to big for my body, it was like a head size of an adult on a child. My bod didn't catch up with m,y head until I was in 8th grade. My life as a child was horrible in grade school i was constantly being treated differently by other students as well as teachers. 

When I was 10 years old I was seizure free and the doctor started withdrawing me from medication.So things were pretty easy for me for a while until adulthood, I started having seizures again triggered by work related stress. As an adult the amount of seizure I was having was off the chart. I was having 30-40 a week. So I had to quit working my full time job and go on disability because I was having to many seizures to work. I also had to start on medication again. My doctor told me that no matter what I did that my seizures would have eventually came back. Throughout my life things have gotten worse with my Leukodystrophy. When I was 22 I starting having problems with incontinence so I have to wear diapers because I can't control my bladder if I have a seizure also I have problems when I go to bed.

From 2010 - 2012 things were starting to be more complicated with my seizures. I was desperate for so relief from my seizures because I could barely do anything anymore. I started doing research on different treatment options for seizures, the one thing that really caught my attention was the VNS.

When I saw this it's like a lite went off in my head and I knew that this was the answer. My whole plan when I went to see the Doctor about the VNS surgery. So that day he sent me home with some information and a DVD to watch about the procedure. I also started watching videos on YouTube to see if there were any people who had the VNS and had any success with it. Three months later I went to the doctors and told him to set up the surgery. On July 6, 2012 I had VNS implanted to help control my seizures. So far it has helped, I still have seizures but I don't have them as  often. I still fight with Leukodystrophy but at least I can control the seizure part of the disease. I know eventually this disease will take my life but until then I will keep fighting this so I can get the most out of life until it does. I will not let this disease define who I am as a person.