DeBunking the Myths of Epilepsy

DeBunking the Myths of Epilepsy

Purple Day, March 26, is dedicated to increasing awareness of epilepsy worldwide.

In today’s society, control is an important factor in our everyday lives. As parents, we try to plan our days for our kids so we can take advantage of every minute in a positive way. We want to know what will be happening, when events will be taking place, who will be there, and how things will go. Yet, when a child develops epilepsy, seizures can happen at any time and any place, and immediately take away that control.

Seizures occur with little or no warning, and happen more often than many people realize. Over 3.4 million Americans, including 470,000 children, live with active seizures. In Northeast Ohio alone, 65,000 people live with epilepsy. Over a lifetime, 1 in 10 people will experience a seizure, and 1 in 26 will be diagnosed with epilepsy. Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined. As a result, people need to educate themselves about epilepsy and seizures so they can help people live well.

Epilepsy is a neurological disease where sudden, uncontrolled electrical discharges between neurons occur in the brain. It’s like a thunderstorm in the brain where the uncontrolled electrical discharge is the lightning, and the seizure effects that happen after the discharge is like the thunder. This causes people with epilepsy to lose control of their body for a short period of time. Seizures usually last from about 15 seconds to 3 minutes, and can consist of anything from simply staring into space for a few seconds to falling on the floor and shaking uncontrollably. While seizures can begin at any age, they are more prevalent in children, seniors, and veterans who have experienced a traumatic brain injury.

Many seizures are subtle and difficult to recognize. Symptoms include staring (often mistaken for daydreaming), forced laughing or crying, fumbling with clothes, muscle jerking, falling without warning, and more. Not all seizures are like the tonic-clonic seizures that you see on TV where a person falls to the floor and shakes. There are more than 40 different types of seizures or syndromes.

Many myths have been created to explain seizures, and have not always accurately defined epilepsy. Here are five myths and answers about epilepsy to help increase the understanding and help with acceptance of the disease.

Myth: People with epilepsy are crazy or possessed
Fact: Anyone that has a brain can have a seizure. Seizures happen because of electrical misfires in the brain that doctors can identify from an EEG (electroencephalogram) — a test that detects electrical activity in the brain. Seizures have nothing to do with bad luck, curses or evil spirits.

Myth: Epilepsy is contagious
Fact: It is not contagious at all. There is no way you will get epilepsy by hanging out with people who do have epilepsy.

Myth: During a seizure, a person can swallow their tongue, so you have to put something in their mouth.
Fact: It is physically impossible to swallow your tongue. A person having a seizure may bite their tongue, but they will never swallow it. Never put anything in their mouth while they are having a seizure, as it can cause injury.

Myth: Women with epilepsy should not have children.
Fact: Women with epilepsy can and should have children if they choose. They simply need to be proactive and talk about this with their neurologist and obstetrician. The anti-epileptic drug(s) (AED) that they are taking could cause a higher risk of birth defects, so working together with their neurologist will help minimize the risk.

Myth: It is easy to tell that a seizure is about to take place.
Fact: Seizures happen with little or no warning. Some people with epilepsy experience an aura or feeling that will let them know that a seizure is about to take place within the next minute or two. That is known as the preictal stage of a seizure. Not everyone experiences this anytime or every time they have a seizure. Many people have lived their entire life not realizing that these “feelings” that they are experiencing are actually seizures.

Leigh Goldie is the founder and executive director of Empowering Epilepsy. She is a teacher, a community wide event planner, a wife, a mother and an epilepsy survivor. Through Empowering Epilepsy, her goal is to allow people with epilepsy and their families to meet others just like them, learn strategies to successfully manage their seizures, and discover resources and best practices to empower their mind, body, spirit and life. For more information, email [email protected], call 440-248-6158, or visit



Talk to Your Kids About Seizures

How can you talk to your child about epilepsy? Let them know that while a seizure can be scary, the person having the seizure may have no idea what happened, and is their regular, ordinary self when not having a seizure. Kids can help by telling an adult that the seizure is taking place, timing the seizure to see how long it lasts, and making sure that any harmful objects are out of the way of the person having a seizure. Never hold a person down during a seizure. This can injure them more than it can help them. You can turn a person who has fallen to the ground on their side (like the fetal position) to help them breathe. Learn more about epilepsy with your child by checking out these books:

Becky the Brave: A Story about Epilepsy
By Laurie Lears

Let’s Learn with Teddy about Epilepsy
By Dr. Yvonne Zelenka

Medikidz Explain Living With Epilepsy – A Comic Book for Epilepsy

Mighty Mike Bounces Back: A Boy’s Life With Epilepsy
By Robert Skead and Mike Simmel

Mommy, I Feel Funny! A Child’s Experience with Epilepsy
By Danielle Rocheford

Shaken by the Silence
By Heather Hackett

The Great Katie Kate Explains Epilepsy
By M. Maitland DeLand

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