The weeks leading up to sophomore Ashley Irven’s sweet-sixteen birthday party will always remain with her.
“The epilepsy started again when I was 15 years old,” she said. “It was a bit of a shocker. It had stopped when I was 2 years old.”
Irven is one of 2.2 million Americans that have epilepsy, a neurological syndrome characterized by electrical discharges that come from the brain and manifest as different types of seizures.
Her story resonated throughout November, which the national Epilepsy Foundation designated Epilepsy Awareness Month.
One goal of Epilepsy Awareness Month is to dispel the myths surrounding epilepsy by educating people about the different types of epilepsy.
Irven specifically has an epilepsy that causes complex-partial seizures. These seizures force her to enter a “daydream-like” state in which she is aware of her surroundings, but is unable to engage with others.
“My whole body freezes,” she said. “I stare into space and can’t respond.”
Leticia Tornes, a neurologist at the Miller School of Medicine, said that most people are familiar with the tonic-clonic seizures that are usually depicted on television.
“It’s not just the main, big one you see on TV,” she said.
But only 40 percent of the population that has epilepsy experiences tonic-clonic seizures, according to Deanna Kirtman, the director of advocacy and education for the Epilepsy Foundation of Florida (EFOF).
Tornes could not give a certain number of epilepsy types because there are many variations and even more types of seizures. EFOF classifies the different types into general forms to understand the effect of each type of epilepsy and how to treat it.
With so many forms, treatment is difficult, Tornes said. The Food and Drug Administration has approved more than 20 medications for the treatment of epilepsy. The problem comes when deciding which one to use for a particular case.
Tornes looks at clinical diagnoses, medical history and tests from devices such as magnetic resonance imaging to narrow down the possibilities.
Irven was relieved that she only had to try two medications until the seizures were controlled.
“I was lucky,” she said. “I know some people that take 15 medications before one works.”
There are also some medications that treat side effects of epilepsy, such as migraines and depression.
If medications do not work, there are two options: either epilepsy surgery or a procedure that inserts a vagal nerve stimulator, which suppresses the electrical signals from the brain that lead to seizures.
“Surgery removes the part of the brain that is causing the seizures,” Tornes said.
But treatment does not end with the hospital visit. EFOF provides a number of programs and resources that support patients with epilepsy. EFOF offers clinical services, counseling programs to individuals and training for healthcare, education and community service opportunities.
Irven was a volunteer at her hometown in Jacksonville and gave speeches at schools and colleges about living with epilepsy. She also started a club at her high school to raise funds for the foundation.
“Once I get started with a speech, I am not really nervous,” she said. “I love when kids ask questions.”
For Kirtman, the most important role of EFOF is helping people who have epilepsy seek treatment, regardless of their financial situation. She ensures that the state continues to help fund EFOF in order to lessen the costs from emergency visits, which totaled about $15 million in 2011 in Miami-Dade County.
“With medical and educational efforts, we can reduce the number of emergency visits,” Kirtman said. “It is cheaper to make sure that the state can manage.”
EFOF provides everything that a person with epilepsy needs for $1100 compared to the cost of an ER visit that costs $5,878 in Miami-Dade County in 2011, according to EFOF.
Kirtman hopes that EFOF can aid the national effort to fundraise for epilepsy research. Approximately 200,000 cases are diagnosed each year with $131 million appropriated. This is in comparison to breast cancer that has 209,000 cases but $741 million in funding for research.
Despite these challenges, the main goal for Irven, Kirtman and Tornes is to find a cure for epilepsy. Irven will continue to volunteer in Jacksonville during her school breaks.
“I like to talk, so I am a godsend to the foundation,” Irven said.
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