Advocating for Myself and Others With Epilepsy

Jeremiah is sharing his story about advocating for epilepsy awareness

By Jeremiah Stone , Alabama

Person with Epilepsy

Tuesday, November 14, 2023

In the fall of 2017, I did not know much about epilepsy. Sure, I had heard about it, but I had no idea what triggers were or that epilepsy affected so many people. I had not even seen a seizure firsthand, or at least one that I recognized. Then, one day, a seizure happened to me. I woke up groggily while being loaded into an ambulance by paramedics at my parents' house.

I was 23 years old, home for a few days, and working on graduate-level schoolwork when I had back-to-back tonic-clonic seizures. The ER doctors in my rural town could not find any more seizure activity. All seemed fine, and they sent me back home with instructions to follow up with a neurologist. The first neurologist I visited did not see anything abnormal on the initial EEG, waved off the seizures as a "freak accident," and sent me home. After that, my life returned to normal for a while.  

Two years passed, and then it happened again. I was in my final year of my master's program, with my wedding just a month away. While at a weekend intensive for classes, I had another tonic-clonic seizure. I was rushed to another ER, where I was told the same thing as two years prior: nothing abnormal was found. At this point in my journey, my fiancé became my biggest advocate. Her little brother battled epilepsy most of his life, so she knew what I was dealing with, and she knew I needed answers. While finalizing our wedding and beginning our new life together, we sought those answers together.

I switched doctors and started asking different questions. We were able to get an inpatient EEG scheduled just weeks after our honeymoon. What was supposed to be a weeklong stay turned into 26 hours after the team saw enough brain activity to determine my epilepsy diagnosis. My question became, "Had I been having other types of seizures, and no one knew it?"  

With the help of medicine, I have been seizure-free for almost four years. I count each day without a seizure as a true blessing! During this six-year journey, I have learned that true advocacy comes from people on your side who are willing to fight for you, ask tough questions, and be your support when the journey seems dark.

I know thousands, if not hundreds of thousands, of people are just like I was back in 2017. They have no idea what a seizure is, and they don't know anything about epilepsy. They do not know that they, too, could be among the 1 in 26 who will develop epilepsy in their lifetime.

Through my experiences, I continue to advocate, educate, and help others understand the spectrum of epilepsy. It is different for everyone. Through recognition and knowledge of what to do during a seizure - you could save a life. My hope and prayer is that one day, seizure first aid will be required for everyone who works with children and young adults, just like CPR. I will continue to do more and fight for more to increase awareness and make a difference for people living with epilepsy and those who don't know about it yet. 

Reviewed By: Sara Wyen

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