“I’d been having seizures since I was in grade school and just never knew what they were,” Kevin says. “Before then everyone just thought I was daydreaming or not paying attention. I used to get notes home from the teachers saying, ‘Kevin daydreams too much’ or ‘Kevin needs to pay more attention in class.’”

Kevin’s story is fairly common — misdiagnosis or lack of diagnosis is still a major issue in the epilepsy community. Early detection and diagnosis are very important, but Kevin was already twenty-three years-old when he was diagnosed.

Epilepsy is the fourth most common neurological disease and affects people of all ages. Almost 3.5 million people are diagnosed with epilepsy in the U.S.; over 65 million are diagnosed worldwide. The chronic disease is characterized by unpredictable seizures and can cause other health problems. Unfortunately, epilepsy cannot be cured at this time. Although treatment doesn’t work for everyone, many people have experienced successful treatments for epilepsy.

What happens in a seizure may look different in each person. However, the same behaviors tend to occur in a person each time they have a seizure. The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.

For Barbara, she discovered she had epilepsy as a teenager. “I was officially diagnosed with epilepsy when I was 18, but, in hindsight, I realize I had my first seizures while I was still in high school. At 14, I remember standing in my bathroom admiring my cute new haircut, then coming to with a large lump on my forehead from blacking out and hitting my head on our porcelain sink.”

While some people with epilepsy may have trouble with moving during and after a seizure, most people with epilepsy can do the same things that people without epilepsy can do, including work, drive, travel, etc. Some people may have trouble with physical abilities due to other neurological problems. Aside from these problems, a person who is not having a seizure is usually not limited in what they can do physically.

Since her epilepsy diagnosis, Barbara has continued to live her life fully: “Since then, I’ve finished undergraduate and graduate school, drove a car, got married, had a baby, traveled alone internationally, rode the bus alone across the country, got divorced, participated in half-marathons, and moved by myself multiple times within the United States. In other words, I lived life.”

Epilepsy Facts

  • Epilepsy is not contagious.
  • You can’t swallow your tongue during a seizure.
  • You should never force something into the mouth of someone having a seizure. Forcing something into the mouth of someone having a seizure can injure them. Instead, gently roll the person on one side, support their head, protect from injury, and make sure their breathing is okay.
  • Don’t restrain someone having a seizure. Most seizures end in seconds or a few minutes and will end on their own.

Resources:

Epilepsy Foundationhttps://www.epilepsy.com/

Kevin’s story courtesy of the Epilepsy Foundation of Greater Los Angeles

Barbara’s story courtesy of epilepsy.com/African-American.