Epilepsy affects about 65 million people worldwide, and some three million in the United States. Families and advocates in Virginia are working to raise more awareness about the condition, which causes unprovoked seizures in people of all ages. For WCVE’s Virginia Currents, Catherine Komp reports.
Want to learn more? Watch this profile of Tom McGranahan, author of Under Siege: Living Successfully with Epilepsy, featured on Virgina Currents (TV). And find out more about the Epilepsy Foundation of Virginia and the annual Teens Speak Up event.
On Austin Britt’s 13th birthday, the unexpected happened.
Austin Britt: I guess when you have a seizure you black out. I remember waking up in, I guess it was the ambulance.
Lisa Britt: We had dropped him off at school and then come to our school . . .
That’s Lisa Britt, Austin’s mom, a teacher at Prince George High School.
Lisa Britt: . . .been in my classroom maybe 10 minutes and I received a phone call that it appeared that he had a seizure.
Epilepsy isn’t diagnosed until after a second seizure, so the family had to wait.
Lisa Britt: There’s nothing like dropping your child off at school with that “what if” factor.
A few weeks later, Austin experienced another seizure at school, then several more at home.
Lisa & Austin: I was on the driveway, (Lisa: Yes, playing basketball), with the dog laying over the top of me.
And while the seizures only lasted a few minutes, it can seem much longer for those witnessing the event.
Lisa Britt: The first one that he had with me outside seemed like an eternity because I couldn’t get anybody else’s attention, I couldn’t leave him, my husband was in house, the dog was there helping out as best he could.
Austin was diagnosed with primary generalized epilepsy, which means there isn’t a known cause. Seizures can take the form of convulsions, muscle twitching, difficulty speaking or briefly losing consciousness.
Dr. Jack Pellock: What’s happening in the brain is really a modification of normal activity.
Dr. Jack Pellock is Professor of Neurology and Pediatrics at VCU. He says the brain normally sends signals from one neuron to the next, which is how we think and move parts of our body.
Pellock: When that happens in an uncontrolled way so it keeps firing and firing and firing, then it’s a seizure; it’s uncontrolled, we cannot control it.
Pellock says epilepsy can have an impact on learning and development; it can also go undiagnosed in both children and adults.
Pellock: One of our big challenges and one of our research projects here at VCU is immediate recognition of seizures, because especially when they’re convulsions, the longer it goes on, the more potential injury is to the brain.
About half of all children will outgrow their seizures, says Dr. Pellock, while others will need ongoing treatment to eliminate them or reduce their frequency. For Austin Britt, his doctor eventually found the right medication and he’s been seizure free for three years. Back at Prince George High School, the sophomore is active on the Varsity Golf and Academic Challenge Teams, in Beta and Spanish Clubs and on the school newspaper. Epilepsy has not held him back.
Austin Britt: It’s not curable but it’s not some traumatic, unknown, mystical thing that is un-normal.
Lisa Britt: Or to be feared.
Advocacy is also important to the Britts, who want to help families who haven’t been as fortunate in getting seizures under control. Last summer, Austin organized a golf tournament, raising about $2100 which he donated to the Epilepsy Foundation of Virginia. And this month, he’s headed to Washington, DC to participate in the Epilepsy Foundation’s Teens Speak Up initiative. After learning about advocacy, networking with families from across the country and speaking to legislators, they’ll join hundreds of others in a 5K walk on the National Mall. Catherine Komp, WCVE News.