Your Epilepsy Journey Does Not Define Who You Are

After many years and multiple tests and medications, Ellowyn has not let her journey with epilepsy define her

By Ellowyn Kennedy 

Person with Epilepsy

In May 2015, I had my first electroencephalography (EEG) and was diagnosed with epilepsy. I was eight years old at the time. I had developed sensitivity to certain light and was having absence seizures up to 50 times a day. My seizures were controlled somewhat early on with medication. In May 2016, I had my first tonic-clonic seizure.   

Later, I was diagnosed with primary generalized epilepsy. The seizures were mostly under control for the next couple of years but got so much worse when I was around 12 years old and puberty hit. I had absence and tonic-clonic seizures more frequently, deemed intractable.  

Over the years, I have seen many doctors for tests and medications to get a diagnosis finally. I have also struggled with schoolwork and attendance. Planning events and gatherings with family and friends has been difficult and uncertain. At times I have also struggled to stay positive. It's been a roller coaster.  

Now, I'm starting to go seizure-free for days, sometimes even a few weeks. My medication is working better, and I've been able to reduce the amounts of certain ones. I'm also beginning to transition into a new diet and exploring vagus nerve stimulation (VNS). I'm about to turn 16, and with the help of my mom, teachers, and virtual calls, I'm back on track with school. It still bothers me sometimes, but I'm learning to believe in myself more and not let epilepsy define me.  

I feel blessed to have my parents, best friend Tammy, and service dog Kai on my team. I have learned to identify triggers and plan my day for different scenarios. I still travel with my family and love seeing new places. I love drawing, reading, writing, and even editing videos.  

Epilepsy may change the path I take, but I choose my destination. My advice to others on this journey is this: your journey with epilepsy does not define who you are. Live your life to the fullest. Epilepsy may change your path, but you can choose your destination. 

Reviewed By: Sara Wyen

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