Jade’s Story
Hello! My name is Jade.
I'm 31 years old and was diagnosed with epilepsy when I was 9. I experienced nocturnal seizures from that age up until I was 20 and have been able to manage my seizures with medication. The first time I had a seizure, I was at home with a babysitter. I didn't know how to explain what had happened to her, and she thought I may have had a bad dream. How is a 9 year old expected to understand what a seizure is, let alone explain it? The second time I had a seizure, luckily, my mother happened to be awake and witnessed it. After a series of EEGs, MRIs and specialist appointments, I was diagnosed with generalised epilepsy and started trialling different medications and doses.
Over the years, my diagnosis has changed between generalised tonic-clonic & frontal epilepsy. This past year I was officially diagnosed with Focal Epilepsy. It may have taken 22 years to clarify my diagnosis, but I am incredibly grateful that I have. Even though it doesn't change my medication or seizure management plan, it has lifted an enormous weight off of my chest.
Growing up, I had never met anyone else with epilepsy. I never felt comfortable speaking about it, sharing it, and felt that no one truly understood what I was going through. My experience is that it was a 'taboo' topic, and made many people uncomfortable, and I didn't want to be responsible for making people feel that way.
It wasn't until I was in my late 20's that I decided epilepsy didn't need to be lonely anymore and that speaking about it would make me a stronger person. Since opening up about my condition, many positive things have happened. For the first time in my life, I have connected with other people who have epilepsy. There is such a power in that.
Epilepsy may be part of me, but it certainly doesn't define me, and If I could say anything to 'little Jade' It would be:
• Don't be ashamed of it
•You are not alone
•This does not define who you are
•Keep asking questions
•Speak Up
•Connect with other people who have epilepsy
•Educate others on your seizure management plan
There needs to be more education, resources, and awareness around epilepsy, and I want to be a part of changing the stigma and help raise awareness. If 1 in 26 people have epilepsy, there should be a seizure management plan at school, the workplace, extra-curricular activities etcetera. I've learned that if your people don't want to learn about your condition or support you, they are not the right people.
Thank you to all of the brave people who have spoken up about their journey with epilepsy. You are inspiring and have encouraged me to take action. I am grateful for my parents, doctors, nurses, and friends who have supported me and encouraged me to advocate.
The courage of those living with epilepsy,
inspires us and fuels our journey.
Your gift will help us to continue on the road toward an epilepsy cure.