Derra’s epilepsy journey
My journey started at the age of 9 while at school. It began as a good day, I’d picked out a cute outfit and I actually wanted to go to school - usually I was very hesitant. It was recess and I was heading to the snack line, then it all just went black and I don't remember anything. I woke up at the hospital and my parents told me that I had a seizure, then a year later I had another seizure but this one was status epilepticus, that's when I was diagnosed with epilepsy.
I was put on medication which gave me some weird side effects and I didn’t want to take it. Fortunately, even though I was going through this in school the people I went to school with were so supportive. My parents fought for me to stay in regular classes despite having active seizures all the way through high school. I started opening up about my epilepsy on Twitter back in 2011 - I was meeting so many people online at this time. I started building a community and not feeling alone - I thought "I can do what I want to do and epilepsy isn't gonna stop me!"
Currently I am 2 years seizure-free! Stress was always a really big trigger along with a lack of sleep. For those with similar seizure triggers, pay attention to your body, when you feel stressed or overwhelmed give yourself a break - personally, I get 12 hours of sleep a night.
Read more: 7 tips to relieve stress and relax
Experiences of workplace discrimination
After I graduated college I experienced workplace discrimination. I kept getting fired from jobs, some I liked, some I didn't. The last job I had was in 2017, after this I decided I wanted to pursue my passion - supporting others with epilepsy who are experiencing similar issues.
My last job was as a special education teacher. I was missing work due to my seizures and my boss did not understand my epilepsy, she felt I was just taking days off. I would risk my life driving to work, eventually I got my mum to drive me instead. They told me my job would be safe but by the end of the year I was told I wasn't doing it properly! In another job I hid my epilepsy but I started having seizures at work. HR went crazy at me for not saying anything - from that moment on it felt like they were trying to do everything they could to get me fired.
What is the Saving Grace Epilepsy Foundation?
We are just getting started, our charity is for anyone with epilepsy who needs help. The Saving Grace Epilepsy Foundation is going to support people with epilepsy who face job discrimination, and help people find jobs. I want us to be able to live normal lives with our epilepsy. We also want to improve seizure safety, epilepsy research and provide scholarships for people who want to go to school.
Advice to other people living with epilepsy
Do your research and look up all the medicines a healthcare professional might try to give you. If I could have done it as an adult, I would’ve tried to go natural first. I think nature is always a good route, but some people can't go natural because I don't think the CBD oil works with their body. Also, look up your doctors and their reviews online to make sure your doctor is good.
Experience with doctors
I’ve been with my current doctor for over 14 years, if I see my doctor in the street and need some help or advice, he’d give that - so I like him. I switched from him briefly because I wanted to try something different and that was a terrible experience. This doctor made me feel like I was being experimented on, it was bad for me as my seizures changed.
She took me off of my previous medication as it could potentially block me from starting a family. Instead of weaning me off a medication I had been on for 20 years, she immediately changed my medications. I went through that process for a few months until I had a really bad seizure which resulted in a concussion. All of these weird things happened, my eyes and face started twitching and I was hallucinating, she responded that this was all ‘normal’. I then decided to go back to my old doctor.
Users can connect with their neurologist through Epsy Hub, the platform for healthcare professionals which can be synchronized with the Epsy app, for improved conversations during appointments.
I’m very passionate about my epilepsy advocacy and also writing too, I foresee myself doing that as a career. I also love watching documentaries and reality TV, at the moment I’m watching ‘The Real Housewives of Atlanta’ because of the sisterhood!
Share your story with us
At Epsy we love to share our users' stories with the community, if you would like to participate then contact our team at email@example.com.