QUEENSBURY -- Queensbury High School junior Kara Tougas knows what people should do if they are having a seizure.
“Make sure there’s nothing in their mouth. Don’t yell at them, move or shake them because it will make it last longer. If it lasts longer than 5 minutes, call 911,” she said.
As an epileptic herself, Tougas is familiar with the ins and outs of the disease, which is caused by nerve cells in the brain producing abnormal electrical impulses that often result in seizures.
More than 2 million Americans have epilepsy and more than 300,000 are under the age of 15, according to the Centers for Disease Control and Prevention.
However, there are many people who do not know that much about it. Tougas hopes that will change through her advocacy efforts. She is traveling to Washington, D.C., later this month to participate in “Teens Speak Up,” a conference sponsored by the National Epilepsy Foundation, which is paying for the hotel, airfare and conference.
More than 40 youths from all over the country are participating in the March 23-25 event, according to Bob Bain, spokesman for the Epilepsy Foundation of Northeastern New York.
On the first two days of the events, Bain said students learn about government and receive training about how to talk to Congress about these issues.
On March 25, the students will go to Capitol Hill to meet with members of the House of Representatives and senators from their area, or their staffs.
“They basically tell their story — what (epilepsy) is, why it’s important that we have epilepsy research and funding from the federal government,” he said.
Students will also make a commitment to continue their advocacy throughout the year at the local and state levels, Bain added.
These efforts will increase overall awareness of the disease, according to Bain.
“There’s still a stigma about epilepsy. Some people don’t like to talk about it,” he said.
Tougas’ caseworker from the Epilepsy Foundation of Northeastern New York in Albany nominated Tougas to represent the region.
Tougas’ mother, Kathy Barnes, said her daughter wasn’t officially diagnosed with epilepsy until she was 4 because she didn’t exhibit the typical symptoms.
“They told me for years that she was passing out,” Barnes said.
Epilepsy doesn’t always cause seizures where the entire body is shaking, according to Barnes.
There can be partial seizures that cause twitching and shaking of just one body part, Barnes said. Or, people can be conscious but not aware of what they are doing.
The day before the event starts, Tougas and Barnes will also take part in the National Walk for Epilepsy on March 22.
Tougas has a page on the National Walk for Epilepsy’s website to raise money for the walk and, so far, has raised $205. The page can be accessed by visiting giving.epilepsyfoundation.org, clicking on “National Walk for Epilepsy” and then clicking on the “Donate” link right after it says “Join the Fight.”
Tougas also received another $60 in checks from family and friends.
All funds raised will benefit the local Epilepsy Foundation office, which helps fund summer camp scholarships and activities for local children with epilepsy.
Tougas and Barnes are also planning to visit some museums and memorials while in Washington.
“We’re going to go a few days early, stay with our cousin who lives down there and go sightseeing,” Tougas said.
When she is not busy being an advocate, Tougas said she likes to play basketball and soccer, and bowl. She is also a member of Students Against Destructive Decisions and the walking club, and she is active in the youth group at New Hope Community Church.
She is currently enrolled in the Career Pathways program, which allows her to try out different types of careers during a part of the day and take her other academic subjects in the other half.
She is a typically active teenager.
“You can still live a normal life — even with epilepsy,” Tougas said.