News Magazine of the UW Department of Communication
By Kendra Abernathy
“Seizures are frightening experiences for all involved. The first time my boyfriend witnessed a seizure, he thought I was dying or that my brain was going dead. That was my sixth seizure,” Sarah said, a UW student diagnosed with epilepsy at age 4 who wished to keep her last name confidential.
Despite Sarah's determination to live a normal life, growing up with epilepsy has not been easy.
“When you're little and have seizures, you are too young to really understand what's going on. But going through it as a teen or young adult, when you know that you are different than other people, is much harder,” Sarah explained.
The transition to UW from high school can be a difficult experience for freshmen, but for epileptic students like Sarah, the increased freedom and independence coupled with academic stress can lead to increased seizures.
According to the Epilepsy Foundation, epilepsy is a neurological condition that disturbs normal electrical functions of the brain, producing what's known as a seizure. More than 2 million people in the United States suffer from epilepsy, and by 20 years of age 1 percent of the population can be expected to have developed epilepsy. This means that of UW's 28,750 undergraduates, about 300 will have epilepsy by age 20.
While measures can be taken to avoid epileptic incidents, patients with epilepsy have a mortality rate two to three times that of the general population.
Members of the UW community were reminded of this on Oct. 31, when an undergraduate, Caitlin Olson-Johnson, died from complications of an epileptic seizure.
“Caitlin took precautions, including sleeping on the bottom bunk so she wouldn't fall off if she had a seizure in her sleep,” Olson-Johnson's former roommate, Kelly Church, stated. “She had also told her roommates what to do in case she did have a seizure.”
Olson-Johnson had a seizure during the night of Oct. 29. She was found unconscious the next morning and was taken to Harborview Medical Center , where she later died.
“I was unaware that Caitlin was epileptic until I witnessed one of her seizures this past summer. After the ambulance came and the medics said Caitlin was okay, she told us that she was diagnosed with epilepsy when she was 16 but had not had a seizure in several years,” Church said.
One of the most difficult challenges epileptic students face is telling the people around them that they have a seizure disorder that may require medical attention.
“It's hard because some people are afraid and suspicious. People always look at you weird and may talk behind your back,” explained Sarah, who relies on her inner strength to overcome obstacles. “I have to trust that the people around me have the ability to re-evaluate their assumptions because then I can live my life on my terms, not theirs.”
Epileptics have unexpected seizures for many reasons. The most common one is that they've failed to take their medication properly. But drugs, alcohol, sleep problems, stress and sensitivity to light also can lead to seizures.
It's hard to avoid those triggers, particularly in college, so the Epilepsy Foundation suggests that people with epilepsy take these precautions:
Federal law prohibits colleges, universities and post-secondary programs from discriminating against an individual because of his or her disability. It also requires that reasonable accommodations be made for students once they make their condition known to the institution.
According to the U.S. Department of Education, certain accommodations are available to students with hidden disabilities. These services are available through the UW's Disability Resources.
For UW students with epilepsy, Disability Resources offers flexible class schedules, modified test arrangements, counseling, therapy and other services and accommodations based on individual needs.
“There are sacrifices I have to make and precautions I have to take,” said Sarah. “I make sure to get some sleep, I avoid strobe lights, and I don't drink alcohol. Sometimes that means not going to a party, but I do it because if I didn't, I wouldn't be able to go to any parties.”
To stay positive, Sarah views these forfeitures as a small price to pay for preventing a “worst case scenario situation.”
“I try not to think of death. My life is as normal as the life of the person who sits next to me in class,” Sarah said. “There are struggles, there are ups and downs, there is success and failure, stress and worry in both of our lives. And we both have the will to persevere.”