This Months FIGHTER.........

JULIA!!!

 I am so excited to introduce you to this months Fighter Julia! We have met some amazing kids whose stories were told by there equally awesome moms but I wanted to do something different this month.  I wanted to introduce you to a teenager and let her tell you her story herself.  I hope you enjoy reading this beautiful young ladies story and it inspires you to support Epilepsy Awareness!!

Childhood years are supposed to be filled with joy and laughter… a worry-free experience that softens the future challenges of life. Even now, I sit in my high school classrooms and listen to stereotypical questions from my teachers and peers. “What was your childhood like?” “What do you remember?” It’s amazing how many pleasurable memories seem to fade away and how the life-altering moments, stay with you. The year I was diagnosed with Epilepsy was the year my parents divorced, and those are the two days I remember in specific detail.

I remember sitting in the waiting room at Children’s Hospital of Philadelphia feeling scared and wondering what was going to happen to me. I was told that I had a disease called Absence Epilepsy. 

The way I explain it to people is that I blank out for two to six seconds and then I get a feeling when I “come back”. Almost like my brain is sending me a signal saying, “Snap out of it Julia!”

For most of my life, my Epilepsy was controlled. I would take Zarontin every day, twice a day, and every so often, as I grew, they would raise the dose. But I would always be seizure-free. I use to hide my Epilepsy and keep it a secret. I remember having my first sleepover in 6th grade and crying because I was so embarrassed to bring my medicine bag over my friend’s house. My mom would decorate it, make it as pretty as possible, and I still wouldn’t want to.

As I got older, my body stared to change, and the Zarontin wasn’t really cutting it. Earlier this year, the week before prom, the stress from school, prom, grades, cheerleading, and potentially getting my permit to drive was overwhelming.  I turned in the paperwork to get my permit, and had a seizure THAT DAY.  Now I can’t drive for at least a year – every sixteen year old’s nightmare. To regain control my doctor put me on an additional medicine - Lamictal.  

As I was growing up I didn’t really know much about my Epilepsy. I never really cared enough; they told me it was going to go away once I hit puberty. So I believed them. My family physician also told me I was expected to be 5’3”. I also believed them. Okay so I am 16 years old and 4’11” with epilepsy. Do I believe in human error? Yes. What I learned to do was to just deal with it. If I am going to have this all my life I might as well like it. There are always bumps in the road with my Epilepsy. There will be bumps in the road with anything you do. So what I can’t drive for awhile? That isn’t really that big of a limitation, although it took me a while to come to this place.

As I have gotten older and researched my Epilepsy, I have become more comfortable with it. I don’t mind telling people anymore. I don’t feel like it is something to hide.  Every year when I go to Children’s Hospital, I see so many children whose diseases are more visible and severe, and I feel strangely grateful.  I know it could be so much worse.

My Epilepsy is “idiopathic”, meaning no one knows how I got it.  It could be genetic or it could just be pure luck. In my case, I believe it’s luck.  Because of my Epilepsy (and Asthma, and some non-specific learning challenges), I sometimes need to work harder to achieve my goals.  I have learned to communicate better, to be more strategic, and it has given me greater empathy for other people and their own challenges.  Because of my Epilepsy, I take my health more seriously.  Teenagers are faced with many important choices and peer pressure.  Because of Epilepsy and understanding the importance of my health, I take pride in making the right decisions.  I am captain of my school’s Varsity Cheerleading team, and participate on a level three All Star Cheerleading team as well. I am proud of my athletic and leadership accomplishments, and will not let my Epilepsy hold me back.  I don’t use it as an excuse – I am determined to move past it.  

I hope you enjoyed reading Julia's story and how this brave young lady is not letting epilepsy win!   Also, please do not forget that November is Epilepsy Awareness Month! Please talk about it to everyone you know.  Chances are someone you know may have epilepsy.  Would you like to show your support? Then please consider registering for our 5K Run and Fun Walk at the Philadelphia Zoo.  Please visit www.eraceepilepsy.com you can also donate directly to KARE Foundation by clicking on the donate now button on the blog home page.  Thank you for following us and until next time!