October 26, 2020

Kelsey & Refractory Epilepsy

Meet Kelsey, a 17 year old from Atlamonte Springs, Florida. She lives with refractory epilepsy. Her message to everyone living with epilepsy is to keep hope and be positive.

About Kelsey:

Hey, I’m Kelsey! I’m 17 years old, and live in Altamonte Springs, Florida. My epilepsy journey began 4 years ago; I live with refractory epilepsy, or drug resistant epilepsy (DRE). I have tried lots of medications, and due to my epilepsy being on either side of my brain - I am not eligible for surgery either.

I love to read Sci-Fi, romance and Harry Potter. Also, I like to learn new things (even outside of school!), hang out with my family, and watch movies. Journalism is a big interest of mine - I write for my school newspaper. 

Kelsey & Epilepsy:

My first seizure was in 2016, I’ll never forget the day. It was me and a friend, just hanging out before math tutoring, next thing I know I am being woken up by a firefighter. Then I was rushed to hospital and I was told I have epilepsy. 

Since my diagnosis, I have been on a big journey. In school, other students don’t really understand. One of the teachers is so great at supporting me me with my condition, she is always the one to help me out if I have a seizure in school. Loads of my friends are great too, I’ve lost some friends but the ones who stuck by me will be around a long time.

Kelsey in the epilepsy community:

I’ve tried a few ways to connect with others who have epilepsy. It’s hard, I don’t know anyone in real-life with epilepsy who is my age. One time, I tried a support group, but that didn’t really work out. Eventually, I discovered a whole community on Instagram. I created my account - @epilepsysanctuary - and started posting! The Instagram community is so supportive, we always look out for one another, it’s really nice.

Positivity is at the heart of the epilepsy community. I have never come across any negativity. We’ve all been through so much, we have learned to stay optimistic because of this. 

Kelsey & Epsy:

I find it hard to remember to take my medication! Epsy reminds me and logging my seizures is so helpful too. The insights allow me to assess whether my medication is working, this makes it clearer as to how I can manage my condition and plan ahead.

The weekly insights show you a view of your percentages too, me and my Mum use these and she says ‘ok, let’s try changing this and see if we can get that percentage down next week!’. It reassures me and my Mum and allows us to better understand my condition.

Kelsey’s message to other teenagers with epilepsy:

Don’t lose hope. Keep your hope or you’ll lose yourself. I gave up for a period of time and I was in a dark place; my friend took me to her Church support group. People in the group didn’t treat me like a baby, they didn’t treat me differently, they became my family, and that’s when I accepted my condition.

Epilepsy sucks but you will be okay. There are networks out there that can really help you out, keep your faith. If you are trying to find online community support groups, read our article here.