Support group hopes to end isolation

Lawrence resident wants to reach out to others with epilepsy

The seizures shook Beth Wilkinson’s life apart.

She began having them in front of her students seven years ago, when she was still able to teach.

Then, even after she received an implant to curb the episodes, Wilkinson still struggled with the side effects of epilepsy: depression, anger, the need to withdraw.

“I was in total denial,” she said. “I was angry.”

Now, Wilkinson hopes to reach out to others in the community that live with epilepsy, a near-crippling nervous system disorder, by organizing a Lawrence-based support group.

The group is scheduled to have its first meeting at 4:30 p.m. Feb. 13 at Independence Inc., 2001 Haskell Ave.

Though there are other support groups working in the state, Wilkinson said she felt isolated in Lawrence, dealing with her experiences alone.

The disease, a nervous system disorder that sends seizure-causing waves into the brain, has left her without the ability to drive. She often has difficulty talking, and her medications make her woozy.

Beth Wilkinson, who has suffered from seizures since 1999, is organizing a Lawrence-based epilepsy support group. Wilkinson is pictured with her son, Zach Volgarino, 21, who has been Wilkinson's biggest supporter.

After suffering alone for so long with a disorder that affects so many, she decided to call out for a long-needed support group so others could share their stories.

“It’s kind of a shot in the dark,” she said. “But we’re going to have to start one.”

Though the disorder has affected people since the dawn of history, long strides toward effective epilepsy treatment have come only recently.

AED, a drug that suppresses the release of nerve pulses that trigger seizures, first came into use in 1912, more than 2,000 years after Hippocrates first identified epilepsy as a “brain disorder,” rather than a curse or demon-induced reaction.

Over the years, better, more effective suppressants entered the market, culminating with the work of Dr. Ivan Osorio, a neurologist at University of Kansas Hospital who began testing an implant that suppressed the nerve impulses that caused epilepsy’s crippling seizures.

Wilkinson received the implant, and she said it changed her life, reducing her seizures to the point she hardly notices them.

But the social and mental barriers associated with epilepsy remained. Wilkinson said the experience of having seizures in front of her students left her at home, alone, afraid or unwilling to restart her life even after the seizures had stopped.

Plus, she said, she still deals with rounds of testing that take hours, involve numerous procedures and leave her too exhausted to speak.

The support group meetings, she hopes, will help her as much as others.