TEENS LEARNING HOW TO COPE WITH EPILEPSY

New medicines and understanding of the ailment helps individuals deal with chronic disease of the nervous system.

When 16-year-old Tanisa Strong found out that she had epilepsy, she felt alone and depressed. The Children's Express editor _ and co-author of this story _ says she spent her days in her room "having gigantic pity parties."

"A lot of kids try to deny that they have epilepsy," said Tanisa. "Whenever something went wrong, I asked two questions: `Why me? What did I do wrong to get epilepsy?'

"I can tell the whole world that some of things they say about epilepsy aren't true. For example, being possessed by the devil, being evil or mentally insane. Some people think that we can't do things because we're handicapped.

"I don't think that we are handicapped, because if that was true, everyone would be handicapped in one way or another."

What helped Tanisa deal with her condition was finding out about the Teen Awareness Program, a support group for teen-agers who have epilepsy.

"The group emphasizes social interactions more than anything," said Liz Crook, founder of TAP. "They have someone to share experiences with. . . . But we hope at some time to incorporate education."

Crook said the teens in the program "have developed deep friendships that I think will continue beyond the TAP group. We just like to talk to each other or have some fun. We talk about previous events and what is going on now."

Types of seizures

More than 2 million people in the United States have epilepsy, according to Amber Pencek, a clinical charge nurse at the Rehabilitation Hospital of Indiana in Indianapolis.

The most difficult part of being epileptic is having seizures and not always knowing when to expect them, Pencek said. There are at least 22 different types of seizures.

"A lot of epilepsy is having grand mal seizures (severe convulsions with loss of consciousness)," said Anne Matzek, an epilepsy patient. "Once you've done that, there's not a whole lot of other ways that you can embarrass yourself."

Grand mal seizures, also called generalized tonic-clonic seizures, last from two to five minutes. They differ from the two other main kinds of seizures _ petit mal, or absence seizures, which are characterized by a blank stare and last just a few seconds, and partial seizures, in which part of the body, such as an arm or leg, jerk but the person stays awake and alert.

"Epilepsy is not unlike a short circuit of electrical energy in your home. If you get a surge of electrical energy in your home, the lights flicker and then they go out _ right?" Matzek explained.

"When I have a seizure, I get an overcirculation of electrical energy over a weak spot in my brain, my brain flickers and I pass out. Or maybe it flickers and I shake, depending on how involved it is," she said.

For Matzek, the challenge was learning to live with epilepsy. She gave up her teaching job after having a seizure in front of her class.

"I've learned new talents because I've had to give up other talents," she said. "I've learned new ways of coping with things because I had to give up other ways that I coped."

Matcek said her epilepsy gave her more faith in herself.

"You tend to gain self-confidence, in being able to take other risks because, I mean, you've already done this (have a seizure), so you might as well go for it," she said.

How family is affected

Having epilepsy not only affects the patient, but also affects the patient's family.

"I think you and the people around you grow," explains Matzek. "My family is much more compassionate and understanding of other people because they know what it's like to live with someone who's different."

Tanisa's mother had a similar experience.

"I think in my case with Tanisa, other people thought of it as more of a handicap than I did. Other people had the barriers or put up the walls, where we as a family tried to support (her), tried to help her learn that there were differences in life," said Cheryl Strong. "Everybody is different, so we look at this as God's gift to us."

New medical advances can control the seizures caused by epilepsy. Some of the medication produces such side effects as skin rashes, respiratory problems or making the person appear drunk, Pencek said.

Matzek takes a drug called Dilantin. She described one side effect:

"I have periods where the brain operates very slowly, and I have to compensate for that," she said. "I can walk into a room full of people, including my husband, and not be able to tell you what their names are.

"But it is very short-lived and it goes away and I just go, 'Oh well, that's the way I am."'

Medication doesn't work for all epilepsy patients. For them, surgery is an option, but it is performed as a last resort only after extensive testing, because it involves removing part of the brain.

Tony Bogenschutz underwent the surgery on Nov. 7, 1991.

"I no longer have seizures," said Bogenschutz. "My last seizure was on Oct. 27 (1991).

"And now I drive. I hadn't driven since '82, and now I own my own vehicle for the first time in my life. So it's quite a change."

FYI

You can contact The Association for Epilepsy Awareness at (317) 842-3506 or the Teen Awareness Program at (317) 577-2332.

READING LIST

A Handful of Stars by Barbara Girion; Scribner, 1981.

Epilepsy by Alvin and Virginia Silverstein; Lippincott Co., 1975.

What Difference Does It Make, Danny? by Helen Young; Deutsch, 1980. To order send $12.50 to British Epilepsy Association, Anstey House, 40 Hanover Square, Leeds, LS3, West Yorkshire, United Kingdom.

Lee, the Rabbit with Epilepsy by Deborah Moss; Woodbine House, 1989. To order send $12.50 to: Woodbine House, 5615 Fishers Lane, Rockville, Md. 20852.

SEIZURE FIRST AID

DO keep calm.

DO protect the person from injury.

DO remain in attendance. Stay nearby until the person is fully alert.

DO help maintain airway (turn the person on his/her side as soon as possible).

DON'T restrain movement. You can't stop the seizure.

DON'T force anything into the mouth.

DON'T offer any food or drinks until the person is wide awake. _ From Epilepsy Foundation of America