Epilepsy Toolkit earns national honours

Sometimes when Dylan Di Girolamo zoned out in class, her teachers or classmates thought she was just tired. One person, thinking she was high, once phoned police for help. Unfortunately, those misconceptions about seizures did not simply vanish when someone thought to check her MedicAlert bracelet.

“That’s what inspired me to make this Epilepsy Toolkit,” explained Di Girolamo, BA’17 (King’s University College), BEd’19. “You’re going to have a student in your class or your school who has epilepsy and people don’t know how to handle it.”

The Epilepsy Toolkit just won second prize within the Attitudinal/Systemic Barriers category of the Innovative Designs for Accessibility (IDeA) national student competition, awarded by Universities Canada on behalf of Employment and Social Development Canada. The competition aims to inspire university students to develop innovative, cost-effective and practical solutions to accessibility-related barriers.

Epilepsy is a brain disorder in which mis-firing electrical signals produce seizures – with symptoms ranging from ‘absence’ to muscle twitching to spasms that can lead to loss of consciousness.

Di Girolamo’s toolkit is a user-friendly guide for teachers and students to help understand and respond to seizures. It includes a leaflet with easy-to-read descriptions of what a seizure looks like and how to respond, a timer and a voicebox with recorded step-by-step seizure first aid.

“People panic during an emergency. Think of this as doing something like what a defibrillator does – it talks you through it,” she said.

Debora Van Brenk // Western NewsCreated by Dylan Di Girolamo, BA’17 (King’s University College), BEd’19. the Epilepsy Toolkit includes a leaflet with easy-to-read descriptions of what a seizure looks like and how to respond, a timer and a voicebox with recorded step-by-step seizure first aid.

The toolkit is intended to be practical, cost-effective and can be placed in any home, workplace, school, athletic centre or other space where needed. It can be customized, depending on the setting, by adding specific instructions for an industrial workplace, for example, or mindfulness cards that offer cues to help students recover.

So far, she has just one kit but plans to create more if there’s enough interest.

For her elementary classroom, DiGirolamo designed a custom bear, Nurse Nick, that speaks words of comfort to children: “Everything is going to be OK. Take a deep breath and give your bear a big hug.”

She plans to bring one into each classroom where she teaches.

Di Girolamo’s was diagnosed a year ago with a kind of epilepsy that produces partial-complex seizures. She would blank out, not remembering who or where she until she regained full awareness a few minutes later.

Today, she takes medication to control symptoms.

When she learned of the IDeA competition, she knew she wanted to do something to improve the outlook and reduce the stigma for people with epilepsy. She refined her idea while volunteering with Epilepsy Southwestern Ontario and during a six-week placement at the Mary J. Wright Research and Education Centre at Merrymount under its Managing Director and Education professor Karen Bax.

Di Girolamo’s submission for the competition didn’t mention she herself has epilepsy. (“I didn’t want a pity vote.”) But, she said, it’s important that people with epilepsy have opportunity to share their stories if they choose, as a way to inform people and reduce stigma.

She was delighted to learn she had won an award for her innovation but is more excited by the thought of sharing her toolkit with classrooms and schools where she teaches. She plans to donate some of the $1,500 prize money to Epilepsy Southwestern Ontario’s ‘Seize the Day’ fundraising walk/run.

The competition awarded honours to nine projects in total, three in each of three categories: Removing Attitudinal/Systemic Barriers; Architectural/Industrial Innovations; and Addressing Technological/Communication Barriers.