‘I have epilepsy, but epilepsy doesn’t have me’
Whitney Saporito Managing Editor
Imagine waking up each morning knowing you may have to depend on a stranger to save your life.
For Sienna Paoni, senior in psychology, this is an everyday reality.
Paoni is one of 3 million Americans living with epilepsy.
The Epilepsy Foundation website defines epilepsy as a seizure disorder, caused by a brief, strong surge of electrical activity that affects part or all of the brain. There is no current cure for epilepsy and in many cases, no known cause. Still, many people with epilepsy live normal lives with the help of medication.
There are several types of seizures, broken down into two categories: Partial seizures and generalized seizures. Partial seizures affect only one side of the brain, and according to the Epilepsy Foundation, are the most common. The second type, generalized seizures, affects the entire brain.
Within each category are several specific types of seizures. Paoni says she experiences myoclonic seizures, which are generalized seizures that cause the arms and legs to jerk.
Although in most cases a seizure is not a medical emergency, Paoni experiences a rare kind that requires medical attention.
“When that happens it feels like someone is taking control of my body,” Paoni said. “I’m aware of it. I sit there and my body will jerk.”
Still, Paoni says epilepsy does not have to be scary. With the help of medication, she has not experienced a full seizure in three years. She still experiences much smaller ones from time to time, but says she usually has an idea that they’re coming. She says lack of sleep, stress and not taking her medication can trigger them.
Due to those triggers, Paoni says there are some limitations to what she can do. For example, she has to get a full eight hours of sleep each night, avoid high pressure situations and can never skip a dose of her medication.
Despite all of that, Paoni does not let epilepsy get in her way. In addition to the busy schedule of school and work, she is active in theater and youth leadership. She also works in any way she can to raise awareness about epilepsy.
She says educating people about how to respond to someone having a seizure is crucial.
“If they know how to react, it can save people’s lives,” Paoni said.
There are several myths associated with seizures, such as the belief that a person can choke on their tongue or should be held down. Paoni says neither of those is true.
She says two of the most important things to know when responding are to not stick anything in the person’s mouth and to not try to hold the person down. She says that in doing so, not only could you injure that person, but also yourself.
Rick Lindskog, university professor in psychology and counseling, says it is also important for people to be educated about epilepsy to clear up misperceptions.
“People with seizure disorders tend to be regarded as different by their peers,” Lindskog said. ”They do everything everybody else does. They’re just like everyone else.”
He says people should think about if they or a loved one were in that position and how they would want to be treated. That, he says, should encourage people to know how to react appropriately.
“There’s not any reason a person with a seizure disorder should have negative implications in their life,” Lindskog said. “People who don’t understand it tend to treat it that way and it’s unfair.”
Paoni, who was diagnosed when she was 14 years old, says she decided to study psychology partly because of what she has experienced.
“I do psychology mainly because I want to help people get through the situations I’ve been through,” Paoni said.
She says it is important to remember there are people who experience epilepsy worse than she does. Though it presents an extra challenge each day, she says she no longer sees epilepsy as a bad thing.
“It was hard for a while, but in the long run I don’t mind that I have epilepsy,” Paoni said. “If I didn’t, I probably wouldn’t be the strong person I am today. I have epilepsy, but epilepsy doesn’t have me.”