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Emmi was diagnosed with epilepsy as a teenager and has since learned to navigate life with the condition while advocating for greater awareness. Here, she shares her experience, challenges, and advice.
Tell us about your epilepsy journey
I have catamenial and photosensitive epilepsy. I was diagnosed in April 2021 - on my birthday.
My first experience with epilepsy - and my first seizure - was when I started having convulsions in the middle of history class during my sophomore year of high school. I remember feeling really confused and ashamed. I was 15 at the time of my first seizure and 16 when I was diagnosed.
Read more: New to epilepsy introduction
When I first received my diagnosis, I was honestly devastated - but also relieved because I finally had answers and could start treatment.
How did you find the right care and identify triggers?
I’ve actually been seeing my neurologist since second grade, and she just so happens to also treat epilepsy.
I began to focus on figuring out what triggered my seizures. After undergoing an EEG, it was confirmed that my seizures were caused by flashing or flickering light, including strobe lights. I don’t remember the specific questions I asked at the time, since it was over four years ago.
How does epilepsy affect your daily life?
Epilepsy can leave me wiped out for hours or even days after a seizure. I also have to be extremely careful with things like going to the movies - I usually Google ahead of time to check if there are scenes that could affect me. I’m also unable to drive due to my seizures.
What does your life look like outside of epilepsy?
I like to foster animals - especially disabled kittens - and take photos of animals at the shelter I volunteer at. I also advocate for my conditions, educate others about service dogs and the important work they do, and share my life with disabilities and chronic illnesses, especially epilepsy, on Instagram. I also enjoy swimming.
Learn more: Swimming with epilepsy
What are you most proud of?
I’ve been able to join an honor society, which I’m really proud of. I also take two online classes at a time, which is the perfect balance for me. And I’m proud to educate others about my condition.
What do you wish people understood about epilepsy?
I wish more people understood that epilepsy is more than just “flashing lights.” It’s so much more than that - it involves medication, treatments that may or may not work, fear of SUDEP, and limitations like not being able to drive or, in some cases, work.
Read more: Jobs for people with epilepsy
What advice would you give to someone newly diagnosed with epilepsy?
The biggest thing is to advocate for yourself. If you’re unable to do that, find someone in your life who can advocate for you.
Take the time to learn about your condition - but if it feels overwhelming, have someone else learn first and share information with you in smaller pieces. Also, ask every question you have. There’s no such thing as a stupid question when it comes to your health, and your doctors, caregivers, or family will be more than happy to answer.
Get ideas: 20 questions to ask your neurologist about epilepsy
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