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Western grad develops epilepsy toolkit to help navigate seizures

After more than a decade of experiencing epileptic seizures, Dylan Di Girolamo decided to create a toolkit to help passersby and caregivers provide the proper support in the event of a seizure.

Dylan Di Girolamo won an award for her innovative kit that helps overcomes barriers

Dylan Di Girolamo created an epilepsy toolkit to help people understand seizures and how to respond to them. (Travis Dolynny/CBC)

After more than a decade of experiencing epileptic seizures, Dylan Di Girolamo decided to create a toolkit to help passersby and caregivers understand seizures and provide proper support to someone experiencing one.

"After facing a lot of discrimination, I realized that people have heard about epilepsy, but they have no idea what to do when they hear someone has epilepsy," said Di Girolama on CBC's Afternoon Drive. "I know firsthand telling people I have epilepsy, they immediately freak out."

Di Girolamo suffers from partial-complex seizures, which affect her awareness and can cause her to lose consciousness.

"While I do blank out, I unfortunately am basically unconscious, I'm not there," she said. "I will answer your questions, but there's no one home."

Di Girolamo says her seizures are sporadic. The last one she had was a few days ago, but before that she went seizure-free for two weeks.

"Every single one is different," she said. "Sometimes I'll get on a random bus and I'll end up in a random end of town."

Because the severity of epileptic seizures vary by patient, Di Girolamo wanted to find a way to help others understand what a seizure is and how they can help. 

What's inside the toolkit

Inside her epileptic toolkit is an information pamphlet, a stopwatch and an audio device that provides instructions on what to do in the event of a seizure.

"The most important thing in this toolkit is a pamphlet that describes the common types of seizures, along with first aid instructions," said Di Girolamo.

The pamphlet inside Di Girolamo's toolkit includes first aid instructions. (Liny Lamberink/CBC)

The stopwatch is included so someone can time the length of the seizure.

"Timing a seizure is very important, as most people think they have to call 911 immediately," she said. "Anything longer than five minutes is considered a neurological emergency and you want to call 911."

Inside Di Girolamo's toolkit is an information pamphlet, a stopwatch and an audio device that provides instructions on what to do in the event of a seizure. (Liny Lamberink/CBC)

When the audio device is activated, seizure first aid steps are played, telling the user to remain calm, check for a medical alert bracelet, as well as instructing listeners about how to position the person and when to call for help.

Where the toolkits will be used

Because Di Girolamo is pursing a career as a teacher, she's hoping to first bring the toolkits to local classrooms with students who have epilepsy.

She also created a stuffed bear she calls Nurse Nick, who she named after a friend who died because of epilepsy.

"I have this teddy bear because as a teacher to young children, I want to bring this teddy bear in to calm them down," said Di Girolamo.

Di Girolamo's toolkit was entered into the IDeA competition hosted by Universities Canada. She placed second in the Attitudinal/Systemic Barriers category, taking home $1,500. She says she plans to donate part of the money to Epilepsy Southwestern Ontario.

Each toolkit costs about $15, with the option of adding a teddy bear.

A Western University grad who has been living with epilepsy has developed a toolkit deliver the right care to people suffering a seizure. Host Chris dela Torre speaks to Dylan Di Girolamo. 7:30