Just before Sarah Wilson turned 16, she started having seizures.
Sarah Wilson, 19, Epilepsy patient: “When I was a kid, when I was about 4 or 5 years old, um, I had two seizures, but nobody really thought anything about it ’cause I never had one again. And then, right before I got my license, um, I started having a ton of seizures and we didn’t really know what was going on or what was wrong, so we ended up going to Children’s.”
Doctors at Cincinnati Children’s diagnosed her with juvenile epilepsy. Stress tended to induce seizures that would cause her to fall on the floor and have no control as her arms and legs twitched and jerked.
Sarah: “I would like go home crying every day. I would be like, ‘I forgot to turn in my English paper.’”
Sarah was a straight-A student and athlete who didn’t know how to deal with sudden memory lapses.
Her epilepsy care team at Cincinnati Children’s invited her to participate in a study that might help her learn coping strategies. Sarah credits the Epilepsy Journey study for helping her turn things around and learn to manage her time, stress and sleep. She got a scholarship to Thomas More University and is studying to be a vet.
Sarah: “I’m a college cheerleader, with college cheer, there’s a lot to entail. I stand 10 feet in the air on people’s hands all the time. With my epilepsy, it was a huge thing, I never thought I would get to do that. Like in high school, I had to stop tumbling because they were scared I was going to hit my head and then cause me to have more seizures. So, really, overcoming epilepsy has been like my biggest thing.”
Avani Modi, PhD, Clinical psychologist and researcher: “When Sarah started and enrolled in our Epilepsy Journey study, what her caregivers talked to us about was her difficulty with attention. She couldn’t focus on her activities, she was distracted by her phone, which is not that uncommon in teens, um, and she had a lot of activities she was participating in, like cheerleading and academics, and so, this was really getting in the way of doing those things as best as she could.”
Today, seizures are rare for Sarah. She’s had only one so far this year. She still uses the coping strategies she learned at Children’s.
Sarah: “It helps you work on yourself, honestly. Like it helps you develop the person you want to like be and how to manage your epilepsy yourself.”