Bailey and Kolton's epilepsy story

It is hard for those of us without epilepsy to imagine what it’s like to have the neurological disorder. Most medical experts can only empathize with their patients.

But 23-year-old Bailey Royston understands both the clinical and personal sides of epilepsy. The UW Health electroencephalogram (EEG) technician, who works at both University Hospital and American Family Children’s Hospital, was diagnosed with epilepsy when she was 8 years old.

“My teacher noticed that I was blanking out and staring into space (absence seizures). That’s when our primary care physician referred us to UW Health neurologist Dr. Raj Sheth,” said Royston.

Little did Royston know that more than just the epilepsy would change her life.

“The medical technicians and EEG equipment fascinated me at a very young age,” said Royston. “From that time, an EEG technician was all I ever wanted to be. I love it.”

Royston shares her story occasionally when the time is right. The time was right recently for Kolton Witte, a teenager who was frustrated that his epilepsy prevented him from driving. He also worried he would never get a job. His mother, Ashley Witte, shared the story with the children’s hospital Facebook page and described the conversation with Royston as good experience for her son.

Witte wrote, “My son has intractable epilepsy and has been hospitalized a few times at AFCH. He gets frustrated when thinking about his future. He may never get a driver’s license. He thinks his life will be ruined and questions how he will get a job and get to work. I’ve been wanting him to meet someone with epilepsy that lives a normal life. We finally did during one of his hospital stays. The EEG tech was talking with us and she told us she has epilepsy. It was so nice for my son to hear her story and see she has a normal life and job even though she doesn’t have a driver’s license.

“He went from being frustrated to smiling. I’m happy that sharing my story can help someone else. I share it especially with both young people and adults, so they don’t feel alone,” said Royston.

Her seizures are controlled by a surgically implanted vagus nerve stimulator (VNS). The VNS sends electrical impulses up the vagus nerve to the brain. She is still on medication, but her goal is to wean herself off as much of it as possible.

“I had one big seizure in 2015 since the VNS was implanted in 2012 but nothing since then,” Royston said. She is currently seeing UW Health neurologist Rama Maganti.

Royston and her life experience bring an important perspective to the neurodiagnostics team.

“We are very fortunate to have Bailey on our team as she shares her knowledge and experience from the patient perspective with our patients and also reassures them and our team,” said Laura Michor, UW Health neurodiagnostics manager. “Not every EEG department is fortunate enough to have the personal expertise that Bailey brings to our team.”

In the meantime, Royston will continue sharing her story with patients.

“It’s kind of strange to be on the other side of things," she said, "but I’m happy to help.”