Living with Epilepsy

Living with Epilepsy

“What is going on?”  

Jeremiah Stone asked the same question to doctors when he woke up in the hospital after his first tonic-clonic seizure. He was 23 years old, working on a paper for his degree at his parents’ house. He would be diagnosed with epilepsy two years later.  

One in 10 people will have a seizure in their lifetime, and one in 26 people will have recurring seizures. For a disability, there is not enough information made available to the public. It is surrounded by stigmas, misconceptions and assumptions.  

According to The Epilepsy Foundation’s website, epilepsy is “surges of electrical activity in your brain [that] can cause recurring seizures.” While the causes of seizures can relate to a brain injury or family history, often enough, the causes of seizures are completely unknown. Individuals with epilepsy have a lowered seizure threshold, which means they are more susceptible to seizures than those without epilepsy.  

Sara Franklin is the Regional Director of the Epilepsy Foundation. As a Birmingham native and someone who lives with epilepsy, she works to fight those stigmas through educating, advocating and implementing campaigns about epilepsy. She fights the stigmas and misconceptions by showing others her passion.  

“My passion is to show people that they aren’t alone. Anyone with a brain can have a seizure, they’re [that] common,” said Franklin. Through her conversations with others and stories about epilepsy, she found they often feel alone.  

“It’s not true,” she said. Franklin works on a campaign every year called The Walk to End Epilepsy. It aims to raise awareness, encourage others and destigmatize epilepsy.  

Franklin talks about the importance of epilepsy education, especially in the education system. Her job at The Epilepsy Foundation is running formal seizure first aid programs to advocate and implement for those living with epilepsy.  

“It used to be the Alabama law that only the school nurse would be allowed to give seizure rescue medicine. Now that the nasal seizure rescue spray is out there, anyone can spray it. This is really important for the rural and underserved areas across the U.S. because not every school has a school nurse,” Franklin said. “Everyone knows what CPR certified is. CPR is not what you do when people have a seizure, but we [The Epilepsy Foundation] have educated people on seizure first aid.” 

Dr. Kathryn Lalor, an epileptologist at Children’s of Alabama Hospital, talked about how epilepsy can sometimes cause fear or assumptions.  

“There is still a lot of stigmas when someone says, ‘seizures or ‘epilepsy.’ I think people should have a better understanding of what seizures are and what epilepsy means [because it] would be better for our patients,” she said. 

Lalor highlights a few misconceptions. “Epilepsy can come along with seizure cognitive disabilities, many people who have epilepsy look like everyone else. It is a misconception, and people don’t realize how many people they know have epilepsy,” said Lalor. She talked about how many people assume it’s a visible disability.   

Lalor was diagnosed with epilepsy at eight years old. It was not caught until her parents saw a significant disruption when she was performing in a school play. “They’re brief and the person who is having them is completely unaware that they’re having them, but they’re also unaware of everything else… Immediately afterwards they’re back to themselves. Before they’re treated, they tend to happen hundreds of times a day,” Lalor said.  

“I think teachers and school professionals are a really big area that could be educated more about looking for signs because they [staring seizures] happened a lot when I was in school. I didn’t know I was having seizures. I knew that when I was called on in class, I didn’t realize it, and everyone was calling my name. I didn’t know what was happening,” said Lalor.  

Those living with epilepsy can feel held back by this disability. Jeremiah Stone lives with epilepsy and he discusses common “triggers” in epileptics.  

“It’s kind of a guessing game and figuring that out,” he said. “The scary thing is that they can change. What can be a trigger now may not be a trigger in 10-15 years. If something becomes a trigger you either alter your medication or [learn] to work around that trigger.” 

“Every single person is different. Sleep deprivation tends to be a huge trigger for most epileptics. But for me, it can be a combination of any of them [sleep deprivation, heat, weakened immune system, stress, etc.],” he said. “When that threshold is lowered, that is when you might have a seizure.”  

Individuality can be a struggle for those with epilepsy. Stone speaks on the vital importance of community, but that can also come with struggles. “One of the biggest things for me was allowing myself to allow my community to help me… [As] somebody who thrives on independence, having to wait on someone to come and pick you up or ask somebody to be there… that was hard.” said Stone. 

“For me, it was amazing to be a part of a family that was already a part of this journey. The people in my life now know what to do now,” said Stone. “Allison has been such an advocate, and she was able to help them [his family] calm their nerves.”  

Epileptics struggle with epilepsy every day, whether themselves or their loved ones. People like Franklin, Lalor and Stone work through the individualities through communities, discussions and educating others with seizure first aid programs.