Life With Epilepsy: A Window Into Patient Experience

Stephanie Conklin (right) with Dr. Fried

Stephanie Conklin (right) with Dr. Fried

How does epilepsy impact the social and emotional life of children? Several Advanced Neurosurgery Associates (ANA) patients are illustrative of its potential effect.

At age nine, Stephanie Conklin complained of loss of speech and hearing. There was no diagnosis. It was when she suffered a grand mal seizure at age 10 however, that the doctors “put two and two together,” as she says of her subsequent diagnosis of epilepsy.

By that age, she says, “It went downhill. School was horrific. I got made fun of constantly. Friendships were difficult. I locked myself in the lockers, sat underneath my desk and almost got expelled – all because of the reaction and side effects of the epilepsy medication.”

“They wanted to put me in special education. I fought hard against that and tried hard to maintain a C to B average.”

One difficult effect of her condition that especially stands out for Conklin is her anger outbursts. While she did not have therapy, she had her activities. “I stuck to my sports; softball was my big thing, but also marching band. I tried to keep going and doing other things that made me normal and not think of myself as abnormal. I demanded from myself to be as normal as everyone else.”

Difficulties lasted all the way until Conklin was an adult. Since having surgery at age 27 with Dr. Arno Fried, she proclaims, “That’s all well behind me.”

Today, Conklin, who will be 34 years old on August 16, 2015, is a certified EEG technician. There’s even a possibility that one day she might end up doing a stint in Hackensack Hospital, where she had her epilepsy surgery.

Perhaps a window of hope is most illustrated by the example of another successfully treated ANA epilepsy patient, and one who was fortunate enough to have her problem resolved at a very young age.

Victoria Vega had her last seizure 10 days before her surgery with Dr. Arno Fried on

Victoria Vega

Victoria Vega

December 15, 2006. Today, she’s a typical 12-year-old who enjoys cheerleading, horseback riding and lacrosse with no vestiges of epilepsy.

Her mother Laura reports that Victoria, who was a toddler at the time of her seizures, has no current memory of her epilepsy experience. “She was too young when it happened.” A clue to Victoria’s recognition of the condition, however, is that even as a toddler her mother states, “She knew when a seizure was coming. When it caused her to begin to fall, she would run to me and hold onto my legs.”

However, her mother continues, “Between seizures she was a normal child. She likes to do everything. She’s not afraid of anything. Even during that time.” It was not a matter of discomfort either. “She never cried or said she was in pain, even after the surgery. She is a strong girl.”

Victoria’s family remained somewhat on edge for perhaps the first two to three months following surgery. “After that,” reports her mother, “little by little we started to relax. Now, I don’t even think about it.”

And isn’t that the goal?

For Victoria Vega, Stephanie Conklin and their families, epilepsy is now a distant memory.

About Epilepsy Care at ANA

ANA is renowned for its innovation and extensive experience in epilepsy treatments for both children and adults. The surgeons at the practice have a combined 60 years experience, and Dr. Arno Fried has performed over 500 epilepsy surgeries. The surgeons at ANA participate and in some cases direct programs that have been designated as Level 4 Epilepsy Centers, the highest possible designation made by the National Association of Epilepsy Centers (NAEC), which is comprised of a select number of epilepsy centers in the U.S.