When Karen St. Marie's son, Erick Gordon, was diagnosed with epilepsy, she saw it as an important opportunity to reach out to the community of people who struggle with the disease – and even those who don't. Spreading education, awareness and support became the cornerstone of her nonprofit – South Carolina Advocates for Epilepsy, or SAFE.
"Right now in South Carolina, there are more than 104,000 patients with an active diagnosis of epilepsy," she said. "An average of 2,100 people per year are diagnosed just in this state. In fact, more people pass away annually from complications of seizures than from breast cancer."
Finding yourself lacking in knowledge about these statistics or epilepsy as a whole? You're not alone; that's one of the main reasons St. Marie was inspired to start SAFE. Even people who are terrified after watching their loved ones suffer a seizure often need to be informed what, exactly, the disorder means, according to Dr. Zeke Campbell, an adult epileptologist at the Medical University of South Carolina.
"I begin [addressing patients and their families] by explaining what a seizure is," he said, adding that a myriad of substances and circumstances besides epilepsy can be responsible for the brain "short circuiting" – drugs, alcohol, illness and trauma, to name to a few.
"About 10 percent of the population will have a seizure at some point in their lifetime," he continued.
Dr. Campbell, as well as Dr. Sonal Bhatia, who specializes in pediatric neurology at MUSC, both pointed out that epilepsy has other symptoms and manifestations in adults and children besides the convulsions of a grand mal seizure, renamed the tonic-clonic seizure, that most people are culturally familiar with.
"Though seizures form the core symptom of this condition, children with epilepsy exhibit a variety of signs and symptoms related to underlying comorbidities," explained Dr. Bhatia. "Children with epilepsy can suffer from poor impulse control, mood problems, depression and suicidality, anxiety, poor attention span and learning problems."
"Many people think about convulsions, but people with epilepsy can have seizures that develop as staring unresponsiveness, shaking or jerking, vision or hearing changes, changes in smell or taste, numbness or tingling or experiential phenomena such as deja vu or feelings of pleasure or fear," said Dr. Campbell.
Treatment for this complex disease has and continues to come a long way. One revolutionary new device, the Responsive Neurostimulator, or RNS, is able to send electrical stimulation to the brain before a seizure starts, theoretically preventing its onset. St. Marie's son, Gordon, who is now 30 years old, was diagnosed with epilepsy at age 18. He is one of the first patients to have the RNS implanted and is considered a national ambassador for the groundbreaking device.
"I've been to the headquarters in California with the other national ambassadors," he said. "My attitude about the future is hopeful and positive because of this device, which is constantly monitoring my brain function. And it's only going to get better."
"In the future, I suspect we will do a better job at determining which patients will benefit the most from certain therapies," mused Dr. Campbell.
St. Marie and Gordon are both hopeful that the work of SAFE, along with the diligence of Drs. Campbell, Bhatia and other physicians who study the brain's electrical system, will continue to improve conditions for those with epilepsy both medically and culturally. However, all admit society has a long way to go in addressing the disorder with knowledge and compassion.
"I had a seizure at a hockey game, and a group of people just gathered to watch me," Gordon pointed out. "The biggest thing is awareness – so many people don't know anything about it."
With November being Epilepsy Awareness Month, it is an important season for South Carolina Advocates for Epilepsy to fulfill its mission. From schools to workplaces, learning what to do in case of a seizure is key to survival for many individuals.
"It's my mission to bring more awareness to the state, to talk to employees and their employers, develop safety plans and establish comfort. The same thing goes for schools," St. Marie said.
"We've talked to a group of paramedics about it before; only a couple of them knew seizure first aid," Gordon added. "We've been to the police department and no one knew."
"Even though epilepsy has afflicted human beings since the dawn of our species, Epilepsy Awareness Month is important not only to empower and advocate for children with epilepsy and their families but also to spread awareness about this common neurological condition to the general population," said Dr. Bhatia.
"SAFE is the only epilepsy nonprofit in the state, and, if I had never been diagnosed, these families would have no place to go for support," said Gordon. "In that way, my diagnosis has changed my life and the lives of others for the better."
For more information on South Carolina Advocates for Epilepsy, visit www.scepilepsy.org or call 843-991-7144.