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Robyn’s Story (Epilepsy)

Robyn's story - epilepsy Every four minutes, someone somewhere in the United States is diagnosed with epilepsy, and this is the story of how I became 1 in 26.

My name is Robyn and I’m an epilepsy patient from Maryland. This is my story. It begins on the evening of December 30th, 2015. I was walking into the kitchen, and then suddenly face planted somewhere between the kitchen and the family room. Apparently, I had a seizure, but I don’t remember anything after falling.

One of my parents called 911 and the next thing I remember was waking up in the back of an ambulance on the way to the hospital. I can only recall bits and pieces of being in the emergency room. I remember being moved from the gurney to a bed and being brought in for a CAT scan. I remember the guy that transported me and I especially remember leaving the hospital.

Fast forward to a few days later when my mom was looking into neurologists, and called my granddad (her dad) for some help. Since he used to be on the board at Johns Hopkins, he had some contacts that eventually led us to The First Seizure Clinic at Johns Hopkins. I had an MRI on January 10th, and then went to Johns Hopkins on January 15th for an EEG and to see the doctor. I’ve had several more seizures since being diagnosed, but I do make the best of it. For example, I participate in the Special Olympics.

Epilepsy is a silent killer, carrying the risk of death from Sudden Unexpected Death in Epilepsy (SUDEP). It’s also the fourth most common brain disorder and yet, it’s rarely ever talked about. Epilepsy talks and when it DOES talk, we just HAVE to listen.

For anyone living with epilepsy, just remember that you are not alone. My little piece of advice is don’t be afraid to consult with your doctors or your parents or whoever is helping you with your illness. It’s the best way to get help! Just never be afraid to talk with other people and ask for their opinions or assistance. You never know what you can learn. Always remember – it whispers, so listen.

Epilepsy may affect my life, but it doesn’t get to determine how I live it. I do!

Submitted 12/05/2022

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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