Battling epilepsy, and its stigma, the goal of Valley conference
In a time of incredible access to information, some topics remain largely misunderstood.
There are 110,000 people living with epilepsy in eastern Pennsylvania.
Epilepsy is a neurological disorder affecting more Americans than Parkinson’s disease, multiple sclerosis and Lou Gehrig’s disease combined.
Still, there’s a level of ignorance many people have about the disorder.
What does epilepsy do? Where does it come from? How is it treated?
Answering those questions and more was the goal of the Lehigh Valley Epilepsy Education Exchange 2018 Conference, held May 2 at the Holiday Inn Conference Center, Upper Macungie Township.
“The conference provides cutting edge information and addresses concerns that are unique to those people living with epilepsy,” said Ellen Baca, Epilepsy Foundation Eastern Pennsylvania Lehigh Valley resource coordinator.
More than one third of those with epilepsy do not respond to initial treatment.
The evening’s first speaker, Dr. Scott Kohler of St. Luke’s Neurology Associates, delved into that aspect by discussing emerging technologies in epilepsy treatment and monitoring.
For starters, there are a several first- and second-generation medications that help patients minimize or eliminate seizures with few or no side effects.
Unfortunately, that does not work for everyone and then surgery is another option.
“It’s not for everyone,” Kohler said. “Epilepsy surgery requires detailed planning and evaluation.”
Devices, such as a vagus nerve stimulator, can be implanted for some patients who continue to have seizures.
Still another device Kohler talked about was responsive neurostimulation, which is for patients who have focal onset seizures “despite several medication trials.”
“There are all kinds of new technology out there,” Baca explained. “There are people who may have had seizures their whole life. They might not realize what is going on and we want to let them know there are other options.”
A second presenter, Jessie Meier, a social worker with Lehigh Valley Health Network, discussed the “emotional roller coaster” of those suffering from epilepsy.
“Research indicates people who are experiencing a number of stressful life events before diagnosis, and those with a history of depression, may be at particular risk of psychological distress when they learn about their chronic illness,” Meier said.
Even in the medical community itself, there remains some ignorance about treatment options.
“There still needs to be education around the fact we have neurologists who are highly-specialized in the Lehigh Valley in epilepsy,” said Elizabeth Beil, president and CEO of the Epilepsy Foundation of Eastern Pennsylvania.
Political advocacy is another aspect of helping patients.
“Putting into place laws that allow for better medication access, that’s definitely something that’s really important,” Beil said. “Some of the restrictions we are seeing these days in Medicare and Medicaid are really effecting the epilepsy population.”
You don’t have to be a neurologist or an expert to help.
Understanding more about the disorder and supporting those who suffer from it is a good start.
“Just talking about epilepsy, letting people know that epilepsy is out there, is really important,” Beil said.