Meet Tyanna, one of our brave #FacesOfEpilepsy contributors.

Tyanna had her first seizure when she was 16 years old

Her teenage years were a struggle, filled many seizures, hospital trips and home visits from paramedics. Attending school was hard, as the lights at the school were a significant seizure trigger.

“I didn’t have normal teenage years, but I got through it and I applaud myself for that, she was a tough girl. I couldn’t be more thankful for everyone who helped me. I got through it because I had so much love and support around me.”

Meet Carolina, one of our brave #FacesOfEpilepsy contributors.

Carolina was diagnosed with epilepsy at 16 months of age. She had seizures throughout her childhood.

In 1998 she underwent brain surgery. Her story is one of resilience, and she hopes sharing it will encourage others to do the same.

Meet Erivan, one of our brave #FacesOfEpilepsy contributors.

Erivan is a musician who channels his experience with epilepsy in to his music.

“I struggled to understand the seriousness of my condition, initially resisting medication in the hope of returning to normalcy. However, that "normality" didn't come. In the midst of sleepless nights filled with frantic thoughts, I put my energy into artistic expression, creating five compositions that formed an entire album.”

Meet Katelyn, one of our brave #FacesOfEpilepsy contributors.

Katelyn Lindahl is 32 and has epilepsy; she was diagnosed at the age of 14.

Katelyn also had a learning disability, mind-slitting migraine, sinus issues, anxiety, and depression but she found a way to move forward.

“Epilepsy does sculpt who I am today. Self-love is the most essential thing in my life. I am always proud to call myself An Epileptic. It is an epic life.”

Meet Tanya, one of our brave #FacesOfEpilepsy contributors.

Tanya Downey has been living with epilepsy for the past 24 years. Her symptoms and seizures began when she was pregnant.

For her, finding a cure would mean not having t depend on medication and have the freedom to seizure free.

Meet Miss Julia Jeffries, one of our brave #FacesOfEpilepsy contributors.

From childhood Miss Julia Jeffries has struggled with epilepsy.

“I have been a Drag Artist for over 25 years now. I'm using my platform to create awareness for epilepsy as a Survivor, as a person who has gone through struggles of so much hate, bullying, mental health. I tell my audience and fans, you can do anything, even if you have epilepsy.”

Meet Nora, one of our brave #FacesOfEpilepsy contributors.

Dr. Nora Gold is the prize-winning author of five books, the editor of a prestigious literary journal, and a former professor.

Her most recent novella, In Sickness and In Health tells the story of a woman who lived with epilepsy as a child--as did Nora.

The narrative around epilepsy has been, historically, fraught with misinformation and prejudice, and Nora addresses this stigma and shame in her writing.

Meet Deanna, one of our brave #FacesOfEpilepsy contributors.

Deanna was diagnosed with epilepsy at age 15. She became became embarrassed and ashamed of who I was. I kept the condition to herself. Over the years, her perspective has changed, and she has chosen to embrace life, her diagnosis and everything that comes along with it.

Meet Carrie, one of our brave #FacesOfEpilepsy contributors.

Carrie suffered in silence for years with what doctors thought were onsets to migraines. Her epilepsy diagnosis took years. Today she is no longer suffering in silence. She wants to help raise awareness so more people can be helped and supported.

Meet Véronique, one of our brave #FacesOfEpilepsy contributors.

Véronique had her first seizure in grade 5. Born and raised in a small Northern Ontario town, she knew very little about epilepsy and didn’t really know anybody that suffered from it. Eventually she discovered she was a candidate for “Temporal Lobe Resection” surgery, which she had in March 2000.

Although she has been seizure free for 23 years, she still feels that epilepsy is a tough subject to talk about. For so long she hid her past and her experience, because she was scared of what other people might think of me if they found out. But today, her wish is to help and encourage others with her experience.

Meet Ashley, one of our brave #FacesOfEpilepsy contributors.

Ashley was in complete shock when, at 21, her neurologist diagnosed her with primary generalised epilepsy. After her diagnosis she isolated herself as she felt ashamed to have epilepsy and was afraid of not knowing when her next seizure would happen. Eventually she joined a support group with others who have epilepsy, and no longer feels ashamed to live with epilepsy.

She is grateful that she is still able to play my favourite sport, curling! This past February, she won bronze at the OCAA curling championships in mixed doubles!

Meet Erin, one of our brave #FacesOfEpilepsy contributors.

Erin is 28 years old, and has had epilepsy since she was 21. Her main struggles have been getting people to understand how epilepsy effects her personal and professional life. She has memory and always feels drowsy.

In October of 2021, Erin had a seizure while driving that resulted to a car accident.

“I remember one minute feeling dizzy and next I wake up upside down realizing that I flipped the car. I’m not proud of the choices I made that day, however, I am happy I didn’t hurt anyone in the situation. After the accident, I was put on medical suspension for six months, and was taking the bus to work. I knew right then and there that I needed to take my epilepsy more serious or could result to worse situations for myself and others.”

Meet Kayhan, one of our brave #FacesOfEpilepsy contributors.

Kayhan is 42, when he was 16 when he had his first seizure was formally diagnosed with temporal lobe epilepsy.

“My life has been entangled and impacted by it in every possible way; and at times, it looks like an impossible task. The threat of seizure is hanging over my life like a Damocles sword. There is hardly a day that passes by that I do not think of it. It’s funny how I stutter multiple times a day, and it hardly bothers me; but a grand Mal seizure every few years is the dominant fear of my life.”

And yet Kayhan has learned to live with it, adapt to it and in some ways live even better because of it.

“The lesson one realizes with a condition like this is that one quickly needs to decide whether this condition is going to control one’s life or not, and I decided within some limitations that I would not let it dictate how I live my life.”

Meet Naomi & Gavi, two of our brave #FacesOfEpilepsy contributors.

Naomi had childhood epilepsy, which overtime she grew out of. Fast forward to April 2021 and her eight-year-old son, Gavin, had his first seizure. He was diagnosed with benign Rolandic epilepsy.

“I am now managing epilepsy again but in a different role. I know what epilepsy feels like for my son because I have gone through it, and I can be an advocate for him. I am guiding my son through all the triggers, symptoms, managing healthy eating and sleep habits and the stigmatization of epilepsy. It’s not scary and I can help him though and he knows I can relate to him because I have had it. I don’t know if I would have been this calm and reassuring if I didn’t experience epilepsy first hand.”

Meet Lisa, one of our brave #FacesOfEpilepsy contributors.

Lisa had her first seizure at the age of 25. After that, she started suffering from seizures on a weekly basis. Eventually she had left frontal lobe resection surgery.

“Epilepsy can change your life tremendously. I lost a lot of my memory after surgery and it took a lot of tries to find the right medication for myself. But even though I feel like I missed out on life, when I look at the big picture, I’m so blessed and lucky to still be here. Epilepsy has given me the chance at being a stay at home mom for my 4-year-old son, stronger wife for my husband, and much more time with my family. A strong support system from my close friends and family is always there for me and helps me get back on track.”

Meet Jeremie, one of our brave #FacesOfEpilepsy contributors.

Jeremie had his first seizure at the age of 1 and many more after. He was officially diagnosed with Epilepsy at the age of 4.

His mom says “Epilepsy is much more than seizures, we're learning this slowly and trying to adapt to our new life everyday, every day is a learning curve.

We have absolutely no idea where his journey will bring us but as a family learning to be strong everyday to be his voice and to be his strength when he needs it, this is something we will keep on doing for life . With time our wish is for jeremie to never feel ashamed of who he is because of his epilepsy and to be able to somewhat have a "normal" life with great friends.”

Meet Elise, one of our brave #FacesOfEpilepsy contributors.

Elise has a diagnosis of a rare neurological disorder, Subcortical Band Heterotopia (SBH). SBH causes intellectual and developmental delays as well as drug resistant Epilepsy. Elise has failed many anti seizure medications. Elise has fought many types of seizures daily and constantly. She’s had drop attacks, tonic clonic, clusters of myoclonic seizures, focal seizures and absence seizures.

“Epilepsy does not define who Elise is. She has an Epilepsy diagnosis. Yes Epilepsy upsets us, discourages us, disappoints us, makes us feel so helpless, interrupts moments, knocks us down. I hate Epilepsy so much. My wish is that by sharing Elise’s journey, it helps educate others, it shines a light on Epilepsy, connects us with other families and hopes to inspire someone. Everyone knows someone who has had a seizure, who has Epilepsy. I truly feel it needs more attention and awareness to help with research in hopes to find a cure for Epilepsy, even better a cure for drug resistant Epilepsy.”

Meet Conor, one of our brave #FacesOfEpilepsy contributors.

In November 2022, Conor was diagnosed with epilepsy after having 3 seizures. His very first seizure was a non-febrile seizure that was due to an ear infection he had. Since that point, Conor has had 47 seizures.

From Conor’s mother: “This has honestly been a huge nightmare and is emotionally the most difficult parenting hurdle I've had to tackle. But Conor has been the biggest warrior through all of this. He goes through all the hardest days with the biggest smile on his face, and it helps me find my own strength.

I knew absolutely nothing about epilepsy before this journey began and have learned so much. It's been emotional and frustrating all at the same time. I encourage everyone to use this month to educate themselves on epilepsy and the first aid around it. Knowing what to do if someone around you has a seizure could save that person's life.”

Meet Heather, one of our brave #FacesOfEpilepsy contributors.

Heather had a breakthrough seizure after 18 years of being seizure free. It blindsided her. All the fear, anger, and frustration she had felt 20 some years ago when she was first diagnosed with epilepsy was now back. But she’s learning how to live with it. One of the things that helps her is reading other’s stories, and she feel less alone in hers.

“Every time I share my story with someone, we both learn something new. This is why I want to share my story here today - I want to keep learning from others and be there for others to learn from me. Every story shared brings greater awareness to what an epilepsy diagnosis can look and feel like, bringing comfort and knowledge to each other and the community around us.”

Meet Emilia, one of our brave #FacesOfEpilepsy contributors.

When Emilia was just 3 weeks old her parents noticed that when she would sleep her eyes would open and close but be rolled back and her head would lift up. They later found out those were seizures. Doctors would later find a ‘birthmark’ on Emilia’s occipital lobe, which would mean that she will need to continue on with medication indefinitely.

“To hear that your child will be on medication for the rest of their life was very hard. But the medication has been a game changer for Emilia. Emilia started Keppra a year ago and it has really controlled her seizures. Because of it Emilia has been seizure free for 5 months now.”