On a mission: educating about epilepsy

By on June 8, 2012

Photo: Katelyn Alderman (center) enjoying time with her sisters Jennifer (left) and Tessa. Katelyn suffers from epilepsy and spends her time educating others about her
condition. Courtesy Photo

by Lynn Meredith
SUGAR GROVE—Sugar Grove resident Katelyn Alderman was only in the third grade when she was diagnosed with epilepsy. She was having staring spells, sometimes 20 to 40 a day, and taking 15 pills a day to try to prevent them. She didn’t know she was having staring spells, and other people may not have known she had them, but when her diagnosis came, her life changed.

Soon, she was no longer invited to birthday parties, because parents with little knowledge about the condition feared it was contagious. Teachers did not know how to handle seizures. For safety’s sake, she could no longer do the activities that are normal for kids.

“I had four sisters, and to see them doing the things I couldn’t—I couldn’t ride a bike or take a bath. I couldn’t have hard candy. I couldn’t climb a tree. I couldn’t play basketball or softball with my sisters in the yard. Those things were not accessible to me,” she said.

For the last five years, however, Alderman has been seizure and medication-free. That can happen as a child matures, but is rather unusual and unexplainable. Now, with a lifetime of living with epilepsy, the Waubonsee student majoring in elementary education is eager to get the word out about the condition and make life easier for those with epilepsy, as well as their family, friends and community.

Reaching out to people and volunteering comes naturally to Alderman. She has always done some kind of volunteer work, so deciding to educate others seemed a good fit.
“I wanted to do something besides school and work,” she said.

Alderman’s mission got a step forward when she walked into her first class as a college freshman. Her instructor asked the class to write about their greatest academic challenge. After some hesitation, Alderman decided to break her own rule about not talking about her condition.

Much to Alderman’s surprise, the instructor asked her to stay after class where the instructor disclosed that her own daughter had been diagnosed with epilepsy.

Together they contacted the Epilespy Foundation of Greater Chicago, put up posters and even filmed a public service announcement with facts about epilepsy that will air on the Waubonsee channel. They are working on ways to get out the facts about epilepsy.

One of those lesser known facts is that 6 percent of the population—roughly 50 million people—have the condition, and many don’t even know it. Alderman likes to tell about another fact that may surprise people.

“ My favorite thing to say to groups is that more people pass away from epilepsy than from breast cancer,” she said. “Breast cancer is so out there, but epilepsy can cause deaths. Plus, 77 percent of people with epilepsy will never know why they have it. No one in my family had it.”

Alderman would like to talk to middle schools or high schools, even if it’s only to the teachers, to make them aware that so many kids have the condition.

“I want to be able to educate people on what to do if someone has a seizure. My ultimate goal is to make it mandatory for teachers to have First Response training,” she said. “If I’d have had a seizure in school, they wouldn’t have known what to do. Anyone who wants me, I’ll come speak. I’ll go anywhere.”

Alderman already speaks to over eight classes a semester at Waubonsee, including English, sociology and special education classes.

“I tell underage drinkers that stress, in combination with alcohol, can be the first trigger for someone who may not know they have epilepsy. I want them to not be afraid to call for help, because people can die from it,” she said.

Alderman also expresses herself through art. She is a landscape watercolorist in the Impressionist tradition.

“Because I couldn’t do sports, my mom and I would start scrapbooking or making cards when I was diagnosed,” she said. “My aunt is a huge painter. She taught me how to draw. If I had a seizure, that wouldn’t hurt me.”