Epilepsy runs student’s life on many levels

By Carol Dwyer
March 15, 2011

“The first time I had a seizure was when I was in the 8th grade,” Natalie Crawford, senior communication major, said. “It was January 2003.”

Crawford said that as soon as she got to school in the morning, she felt funny, was having trouble getting words out and thinking clearly.

“One of my teachers said I should go to the nurse,” Crawford said. “I did and they sent me to the hospital. When I got to the hospital, my parents and a neurologist walked in at the same time and I had a seizure.”

An operation calls for a computer chip to be implanted in the brain to map out seizures of an epileptic patient in Hackensack, N.J. --MCT

Regarding the cause of her seizure, Crawford said that the doctors told her that it resulted from a virus in her bloodstream.

Crawford said that she was homeschooled for about a month following the hospital visit and wasn’t allowed on ladders or rollercoaster rides.

“After that I started seeing a neurologist every couple of months just for check-ups,” Crawford said. “The second time I had a seizure was at the Warped Tour, a music festival that comes around during the summer.”

Crawford said that this was in August 2007, two months after her high school graduation, and that her neurologist told her it was mostly caused by sleep deprivation.

“Before I had it I started to get that funny feeling again where I was having trouble getting words out,” Crawford said. “It’s like a warning sign for me that it’s going to happen.”

Certain activities are restricted to a degree for those who have epilepsy or any history of seizures.

“New York state law is that if you have a seizure, you have to be seizure-free for one year to be able to drive again,” Crawford said. “That was the hardest part about it all. I had to have my parents drive me everywhere and get driven around by friends.”

It is a clear reminder for everyone to not take driving, health and life overall for granted.

“It might not sound that bad but it honestly was one of the worst times of my life,” Crawford said. “Even though a seizure just happens for a part of a day, it has affected my life and it probably will for a very long time and it is all out of my control.”

Crawford said that after years of different tests, MRIs and brain wave tests, her neurologist finally decided to put her on anti-seizure medication a year ago.

“I have to take it every single day,” Crawford said. “Some of the side effects are drowsiness and when I first started taking it I got a lot of headaches just about every day, until my body got used to it.”

Side effects of medications are an important part of life for anyone that needs to take a prescription drug, as we all see in various medicine commercials. As such commercials point out, a prescription has to be right for the person and work safely with any other prescription if he or she is on more than one.

When it comes to the awareness of epilepsy, Crawford said that she only knows a few people that have had seizures.

“If you know someone that has them, that’s when people become more familiar with it,” Crawford said. “I don’t think people are as aware of it as other health problems but seizures are very dangerous and very serious.”

Crawford made a valid point as to why epilepsy should have the same level of attention other diseases receieve.

“If someone is having a seizure, there is nothing you can do to help the person. You have to let it go until it stops,” Crawford said. “People have died from seizures or have had serious brain damage.”

Crawford said she realizes that her case could be a lot worse.

“For having just two seizures I feel lucky that the worst I have to deal with is just to take medicine every day,” Crawford said. “I learned from all of this that you really have to take care of your body and yourself because your life could change in a flash and it could never be the same.”

In her case, Crawford said that it was not a full diagnosis of epilepsy. However, Crawford’s experience shows the seriousness of even one seizure.

People are taking steps to bring more attention to epilepsy and to quiet all misconceptions with a factual image about epilepsy to the public.

Born in Harrisburg, Pa., a young girl by the name of Kaitlin tells her personal story about epilepsy through her blog. Her parents helped her in setting up a website for fundraising and have seen many successes in their efforts.

“Awareness first started with my family and friends,” Kaitlin said in an email. “Sadly, even though epilepsy is one of the third leading neurological disorders in the world, there are so many people who don’t know about epilepsy, the different types of seizures and the treatments.”

Kaitlin also said that includes medications and their side effects.

On her fundraising website, Kaitlin said that she has awareness apparel and has shipped some items overseas.

“A lot of people are surprised by the statistics related to epilepsy and want to help us bring epilepsy out of the shadows,” Kaitlin said.

Kaitlin has had a lot of support for her fundraising efforts, which helped her to raise $1,000 for the Epilepsy Foundation. Kaitlin said she also donated money to the Danny Did Foundation. These are just a few of the accomplishments Kaitlin has reached.

“My biggest success, however, is the fact that I am able to help people get seizure alert / response dogs,” Kaitlin said. “I donate all profits from the sale of my merchandise to the Chelsea Hutchison Foundation in Colorado.” Kaitlin said that they use that money to help people get their dogs and that she was able to help a local woman raise money for her dog as well.

Kaitlin’s efforts to raise awareness for epilepsy has extended to a local radio station and a member of Trans Siberian Orchestra.

“I am excited that their drummer, Jeff Plate, has joined my website and stays connected with me from time to time,” Kaitlin said.

Kaitlin’s work with the radio station aims to choose the Epilepsy Foundation as a charity to receive ticket sale donations from Trans Siberian Orchestra. Kaitlin said that they will play in her area during the winter season.

In April, Kaitlin will be flying to Colorado to speak at an event hosted by the Chelsea Hutchison Foundation. Following that, Kaitlin said that she’ll be flying to Florida in June to speak at an event hosted by Noelle’s Dogs Four Hope.

“Epilepsy awareness starts with one person at a time,” Kaitlin said. “I am excited to be a part of this movement.”

Along with the push for an equal amount of awareness comparable to that of other diseases, people whose lives are affected by epilepsy also face a governmental battle.

According to an e-newsletter sent out by The Epilepsy Foundation, millions in government funding for epilepsy is in danger of being cut. This would impact the ability to research for a cure for epilepsy.

Kaitlin said that her parents, through the Epilepsy Foundation, do a lot to get the word out to their government officials to support funding research.

“Right now congress wants to slash funding and my parents, along with a lot of other people, have been emailing our congress to try to get them to change their minds,” Kaitlin said.

To fight these budget cuts, the Epilepsy Foundation of Eastern Pennsylvania (EFEPA) is hosting a number of events to raise funds and awareness. As more people become aware of it, more can stand up to the possibility of government budget cuts that could delay a cure for epilepsy.

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Carol Dwyer

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