On a screen filled with pink and purple hues, white lines resembling brain waves merged to form the profile view of a person. A sweet and lively melody accompanied the image, and I waited patiently in excitement for the 2020 Epilepsy Pipeline Community Day to begin this past Saturday morning.
Jon Scheuinman, Director of Youth Programs at the Epilepsy Foundation, welcomed attendees to the conference and explained how we’d hear about a variety of topics from people living with epilepsy, their families and healthcare providers.
With over five hours of information, there are so many topics to cover that I couldn’t possibly fit everything into one post.
Instead, I’ll retell the story of a man who impacted me the most. I’ll refresh you on some general epilepsy information and let you know how you can get involved in the epilepsy community. In future posts, I hope to highlight more information about the other topics discussed.
In the first session, we heard from Charles Kilbourne who is a Board Member for the Epilepsy Foundation of Northern California and is a person living with epilepsy.
In 1960, at age five, Charles received his epilepsy diagnosis. During the first forty years of his epilepsy journey, Charles was treated with eight different medications. Although he had some periods of success, none of them would help him gain total seizure control, and his seizures resulted in several ER visits.
His neurologist kept switching him between different medications and at times combining up to three. The constant dose changes and tapering off other medications at the same time, left Charles frustrated and with debilitating side effects.
“I felt my neurologist was playing Russian roulette with my medications,” Charles said. “I was not confident in my neurologist.”
After years of struggle, Charles attended a conference about surgical alternatives in the mid-90s and underwent a right temporal lobectomy in 1999.
As a seizure first aid trainer today, he tells his trainees, “The five minutes I spent with the epileptologist (a neurologist who specializes in epilepsy) after that lecture was more valuable and informative to me than my thirty previous years with the neurologist.”
By finding the right doctor who performed several tests to better understand the type of epilepsy he has, Charles was finally able to move forward in his epilepsy journey. His test results showed a lesion on his right temporal lobe, due to encephalitis he suffered at six-months old.
Armed with this information, Charles finally has the answer to his forty-year-old question of what the cause for his epilepsy was. This isn’t something most people with epilepsy get to find out, but now he knows.
“My sixty-year journey with epilepsy has taught me to find my own voice and to be my own best advocate,” said Charles.
Had it not been for the conference, he would not have known that failing two or more medications meant he had intractable epilepsy. He would not have been informed that there were other successful alternatives he could try that extended beyond the prescription counter.
He wouldn’t be where he is today if he hadn’t asked more questions to educate himself.
With a smile on his face, Charles shared, “I will be seizure free for twenty years!”
Congrats, Charles! I am very happy for you!
For me, the main takeaway from his speech is learning the importance of being an advocate for yourself. If you don’t understand something or aren’t happy with your doctor, find a new one and always ask questions.
Don’t wait! Don’t settle!
It’s not okay to say having a few seizures isn’t so bad. We should find out what we need to get to zero.
With that said, you are the only person who knows how your seizures feel like. Your friends and families who witness your seizures are the only ones who can better describe them to your doctor. If we aren’t informed about our own epilepsy, we can’t provide our doctors with the information they need from us to help them decide the best treatment.
For those of you who don’t know, and as a refresher for those who do, here are the basics.
What is epilepsy?
During his session, David Ficker, a neurologist from the University of Cincinnati Health, explained how the definition of epilepsy has evolved in just the last few years.
“An individual would have epilepsy if they had two or more seizures so you would have to wait for that second seizure to be diagnosed with epilepsy, but over the many years, we realized this wasn’t a practical definition.
“We would often see an individual who had a single seizure. Upon their evaluation, we would determine that they may be at a higher risk of a second seizure. We would then consider treating with an antiepileptic medication at that time,” Dr. Ficker said.
So, what’s new? The new epilepsy definition expands on what needs to happen for a person to get an epilepsy diagnosis.
For an individual to be diagnosed with epilepsy, they can now fall in either of these two pools.
- An individual who has two or more unprovoked seizures.
- An individual who has one unprovoked seizure, plus evidence for an increased risk of another seizure, such as abnormalities in an EEG or MRI.
So, what types of epilepsies are there?
“The other thing to consider is that epilepsy is really a term that just describes that the individual is at risk for recurring seizures. It doesn’t tell us anything about the cause. It doesn’t tell us anything about the prognosis, or the outcome, or the predicted outcome. And there are many, many, many different types of epilepsies with many different types of outcomes,” Dr. Ficker said.
The two major categories he speaks of are: Focal and Generalized Epilepsies
Focal epilepsy means seizures start in one area or group of cells on one side of the brain.
Generalized epilepsy means seizures affect both sides of the brain or group of cells on both sides of the brain at the same time.
If you don’t already know, ask your doctor what type of epilepsy you have. This information is important so you can better explain your epilepsy to others.
There is still so much to do to raise awareness about epilepsy and issues affecting the epilepsy community. By getting involved, we can make a change. And there is one very important thing I learned on Community Day. Age plays no role in making a difference!
The Kids Crew program is for kids ages 14 and under with or without epilepsy. The program teaches kids about epilepsy and seizures. It empowers them to help eliminate the epilepsy stigma and foster acceptance for all people who live with epilepsy.
It encourages them to build confidence and become an advocate in their own communities so they can make an impact.
Jon Scheuinman, who manages the program, said, “I am committed to supporting this committee, and I always believe that kids, regardless of how old they are, can change the world.”
The Teens Speak Up! program provides teens with epilepsy the opportunity to tell their stories to legislators at the nation’s capital and receive advocacy training.
In the next few weeks, The Epilepsy Foundation hopes to launch their new program, Epilepsy Advocacy Champions.
This program gears to those who are 18 and older who have or have a connection to someone living with epilepsy. The program will help teach people about the legislative process and about the issues that are affecting the epilepsy community.
“We’re looking for passionate and engaged advocates, and no government relations or policy experience is necessary, just a true willingness to share your story and get involved,” said Britt Dorfman, the Government Relations and Grassroots Associate for the Epilepsy Foundation.
I received a wealth of knowledge on Community Day, and I can’t wait for what next year has in store!