Ashley's Journey: Epilepsy Awareness
1 in 26 people in the United States will develop Epilepsy at some point in their lifetime. Epilepsy is the fourth most common neurological disorder and affects people of all ages.
My name is Ashley and I was diagnosed with Epilepsy in 2019 when I was 20 years old. I had no idea what Epilepsy even was. I thought there was only one type of Seizure, but there are really over 40+ different types of Seizures. I was having Focal Seizures (auras) for over 2 years not knowing they were Seizures. I would get Intense Deja vu, tastes/smells, really hot, and feel very weird for about 30 seconds and I’d be totally fine after. I look totally normal and you wouldn’t know I’m having a Seizure. They only happened once every couple months from 2017 to the end of 2018. In 2019 they started happening more frequently. In August of 2019 I had one at work and actually passed out after it. Later that day at the hospital I had Grand Mal Seizures and was diagnosed with Epilepsy after also finding out those “weird feelings” I would get, were actually Simple Focal Seizures.
After getting diagnosed with Epilepsy I lost my drivers license and was put on medication 2x a day. Medication side effects can be very intense and my first medication was making me feel horrible side effects. It was hard to find the right medications to stop my Seizures and I had many Grand Mal Seizures due to not being able to find the right ones for a little bit. Losing my drivers license was hard and I felt very hopeless. I then made my Epilepsy Awareness Instagram (@Ashleys_advocacy) and met other Epilepsy warriors, I instantly felt so inspired. I felt so embarrassed, scared, and ashamed of having Epilepsy when I first got diagnosed. That all changed when I realized Epilepsy needs more awareness and your Chronic Illness does not define who you are as a person.
As of November 7th, 2021 I am officially 2 years Grand Mal Seizure free! I never thought I’d make it this far. I also got my Drivers License back in October 2020 after losing it for over a year. I am so blessed to be Seizure free from Grand Mal seizures this long. I unfortunately still have Focal seizures that aren’t stopped by my medication, but I’m hoping I can get those regulated soon! Epilepsy Awareness is so important to me because I didn’t even know what it was before I got diagnosed. Many people that I’ve talked to don’t know what Epilepsy is and that needs to change! 64 million people in this world have Epilepsy. 3.4 million people in the United States have Epilepsy. Epilepsy needs more funding for research to help one day find a cure and better treatment to even one day end Epilepsy. For National Epilepsy Awareness month this November try spreading some Epilepsy awareness, donating to your local epilepsy foundation, or get Seizure first aid certified in a free online Seizure first aid course the Epilepsy Foundation provides on their website! Thank you for spreading some awareness for this Chronic illness that affects millions of peoples lives on a daily basis.
Written By Ashley Calvento. Follow Ashley's journey: @ashleys_advocacy_