Meet McKenzie, a college student who was diagnosed with epilepsy at 14. Despite challenges, she stays positive, educates others, and shares her journey. Read her story below.
When did your epilepsy journey begin?
My epilepsy journey began on July 11, 2018, when I was 14. I was sleeping in the same bed as my sister when her alarm went off, but she wasn’t waking up. I rolled over to wake her, and as I turned back, I started having a seizure.
When I woke up, I was confused to see paramedics leaning over me while I lay on the ground. Everything felt like it was in slow motion, almost as if I were looking at my body from the outside. When I was told I had a five-minute grand mal (tonic clonic) seizure, I couldn’t believe what was happening.
At the hospital, a CT scan revealed a mass in my brain, leading to a follow-up MRI. The doctors found scar tissue and determined that I had suffered a stroke either prenatally or shortly after birth - something no one had ever known. While we now know the cause of my epilepsy, there are no clear answers on how to fully control it. Medication helps, but only to a certain extent.
Learn more: Epilepsy & memory loss
Going home didn’t feel real. My whole life had changed, and I no longer felt like myself. It was as if I wasn’t even in my own body.
What has your experience with doctors been like?
My experience with doctors has been frustrating and confusing. Over the past six years, I’ve seen four different neurologists, yet I still don’t have many answers. I’ve tried four different medications, and only two have worked. Currently, I’m on two seizure medications.
I’ve undergone more EEGs than I can count, but nothing has ever shown up on them, making it difficult to find answers. We’re still searching.
How have you found support for your epilepsy?
I’ve found support by sharing my story and educating others. I help people understand what epilepsy is, the different types of seizures, and what to do if someone has one. I’m not ashamed of my epilepsy, and I’m always open to answering questions - even on the hard days.
Hearing from people who were able to help someone during a seizure because of what I’ve shared has been incredibly rewarding. I’ve put my faith in God, and I trust that He has a plan for me. I’ve chosen to make my journey a positive one.
Learn more about seizure first aid here
What has your experience with the Epsy App been like?
I use the Epsy App to remind me to take my medication and to log my seizures. I discovered it while searching for an app to help me with medication reminders and seizure tracking. I tried a few others, but Epsy was the best fit for me.
What would be your message to someone recently diagnosed?
My message to anyone newly diagnosed with epilepsy is this: Don’t let epilepsy define you.
Being diagnosed is hard, and your life will change - but you are so much more than your condition. Epilepsy doesn’t mean you have to stop doing what you love. Stay positive, embrace life, and remember that everything happens for a reason.
Tell us about your interests
Throughout high school and my first semester of college, I was a cheerleader, but now I’m focused on my studies. I love music, and yes - I’m a total Swiftie at heart.
Want to share your story?
If you’d like to share your epilepsy journey like McKenzie, email our team at contact@epsyhealth.com - we’d love to hear from you!
