Students spread awareness of commonly diagnosed but unfamiliarly recognized condition, epilepsy

Written by: 
Geena DeMaio
A poster with facts about epilepsy on display at BYUH.

 

One in ten people will experience a seizure in their lifetime, and one in 26 will develop epilepsy at some point in their life said Alysha Gurr, a senior from Canada majoring in social work, quoting the Epilepsy Foundation. Gurr continued, “Epilepsy is more common than many of us realize. Epilepsy affects people of all ages, and there are many different types of seizures.

“While talking to students, I felt completely satisfied with the work that we were doing because there were some people who didn’t even know what epilepsy is. A lot of people were surprised to know how common epilepsy is, so spreading awareness is so important. It’s not something people will talk about or hear often until they know somebody who has epilepsy,” Gurr added.

Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical brain activity. A seizure is a sudden surge of electrical activity in the brain. It usually affects how a person feels or acts, according to the Epilepsy Foundation.

Jon Robinson, a speech language pathologist from Canada, said, “I found it quite emotional how epilepsy affects the family, as a speech therapist for adults with neurological disorders and brain injuries. I would be interested to find the origins and where this happens in the brain.”

Spreading awareness

If someone is having a seizure, it is paramount to not put anything in his or her mouth or pin him or her down. Instead, clear an area and place them on their side and keep time of the seizure, explained Gurr.

Important to note is the terminology to focus on the person rather than their medical condition. “’A person with epilepsy’ instead of ‘an epileptic’ is correct reference,” added Gurr. “I hope it’s something that will take a life on campus... and has a lasting voice.”

Netflix documentary “Dogs”

Gurr arranged for the week of Nov. 26 - 30 to be dedicated to focus on spreading awareness of epilepsy. She shared she is motivated to help because her loved ones have epilepsy, and one of her close friends passed away from a seizure.

Students gathered on Nov. 27 to watch episode one of “The Kid with a Dog,” from the Netflix documentary series “Dogs” on people with epilepsy. Corrine Gogolewski is shown as a girl growing from childhood with epilepsy and is paired with a service dog, Rory.

In Ohio, 4 Paws For Ability offers service dogs to children which in turn could save their lives by barking if their caretaker is having a seizure, shared Training Director Jeremy Dulebon. “There is an 80 percent success rate among the dogs but so much of that success depends on the connection between the child and the dog.”

“It’s a constant panicked feeling,” remarked Corrine’s mother, Beth Gogolewski. “Her brain is constantly having to reset, and during the day her eyes flicker back and forth which shows signs of epilepsy. Yet, with Rory it’s like a tag team, it’s not just on the weight of my shoulders anymore.”

Gurr remarked, “It’s interesting to see the family dynamics and how much pressure was on siblings, marriages, and families and the focus on the day to day life.”

Jon Koegler a behavioral coach from Canada, expressed, “We learn how family and relationships provide this foundation that now we are able to support people and adjust to different circumstances in life.”

Gurr responded, “We are given these opportunities and trainings to spread awareness and allow people to have joy whatever their situation may be.”

Koegler continued, “So people affected can still have joy rather than being excluded.”

 

Date Published: 
Tuesday, December 4, 2018
Last Edited: 
Tuesday, December 4, 2018