Epilepsy a condition often misunderstood by others

One thing people with epilepsy want others to know is "epilepsy is what we have, not who we are."

That quote is the mantra of Judy Dorris, public educator and coordinator of the Epilepsy Foundation for Middle and West Tennessee.

November is Epilepsy Awareness Month. There are more than 5 million reported cases of seizure disorders in the United States, according to the Centers for Disease Control and Prevention. About 40,000 West Tennesseans suffer with epilepsy.

"Over 16,000 children under the age of 14 have been diagnosed with epilepsy," she said. "And one in 10 of us will have a seizure sometime in our lifetime."

That's why it's important for the public to be able to recognize when someone is having a seizure and administer first aid, Dorris said.

Mike and Julie McMahon are advocates for epilepsy awareness. Their daughter, Lindsey, has the disorder.

"I think there is a stigma there," Mike said. "People who have epilepsy feel embarrassed at the mention of their disorder. I think when people know and understand it, the myths go away."

Julie said her daughter's epilepsy was diagnosed when Lindsey was 16 years old. She had been having seizures her whole life, but the family didn't know it was epilepsy.

Mike said it was hard at first dealing with the diagnosis.

"As parents, you're happy to know your child has 10 fingers and 10 toes," he said. "When we learned about her epilepsy, we asked ourselves 'Why?' 'What did we do?'"

But they learned there can be many causes for epilepsy and many ways to make Lindsey's life as good as possible, Mike said.

"We have been through a lot, testing medications, things like that," he said. "We do what we can."
Having knowledge about epilepsy is vital for everyone from doctors to employers, Julie said.

"Education is so important, for parents and everyone else," she said. "It helps me to help her. Every day, it's a learning experience."

About epilepsy

There are different types of seizures, Dorris said.

The first and most well-known type is called a tonic clonic which includes stiffening of the body with shaking. An absence seizure is when a person stops what he is doing.

"Children can have 100 absence seizures a day," she said. "They'll be talking and suddenly they stop. Before their epilepsy's diagnosed, most think the problem is ADD."

Other types of seizures may not involve the loss of consciousness. Eyes may flutter, a person may pick at his clothes or smack his lips.

There might be some tingling in the arms or legs, or sometimes a seizure can be just a person wandering around for a couple of minutes, Dorris said.

"It's important to know that not all seizures are the type everyone is familiar with, the jerking, stiffening type," she said.

How to react

In an emergency, the best thing a bystander can do for someone having a seizure is to turn him on his side so the airway is not blocked. It's also good to call 911 for help, Dorris said.

"It's a common myth that someone having a seizure will swallow their tongue, but it's not true," she said. "The tongue is attached to the mouth. There's no way."

Don't try to put anything on the tongue to hold it down, and don't panic, she said.

"Just stay calm, prop something under their head, and wait for the seizure to end," she said.

Another misconception about epileptic seizures is that they are painful, Dorris said.

"People typically don't remember having a seizure, and they don't feel any pain," she said. "It's a blessing for sure."

Epilepsy is not contagious and is not a sign that a person is mentally retarded or mentally ill, Dorris said. It is a symptom of a disorder of the brain.

"It can affect anyone of any age at anytime," she said. "For about 70 percent of people, the cause of epilepsy is unknown. For the rest, it's usually the result of a head injury, a high fever that leaves a lesion on the brain or drug use."

Most seizure disorders can be controlled by medications, but patients must take several medications to do so, Dorris said.

As a former educator in the public school system, Dorris now spends her days visiting schools and talking with students and teachers about epilepsy.

"People who have it are ashamed," she said. "And they shouldn't feel that way. We have got to fight that."

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- Tracie Simer, 425-9629