Sumeyya’s Story
My story with epilepsy begins when I was in grade 7. Towards the end of the school year, my family and I noticed that I would have days where I would just stare blankly into space. They would talk to me and I would not respond even though I was fully conscious. My parents would sometimes get upset because they didn’t understand what was going on. I had always been a healthy child who enjoyed playing sports and did well in school so no one suspected that this might be a medical issue.
It was at the beginning of grade 8, when I was 12 years old and about to be 13 when I had my first full body seizure. It was lunchtime and I was sitting in the soccer box and next thing I know, I'm laying in an ambulance stretcher at the hospital. My whole body was aching and I had a really bad headache. I turned to my side and I saw my vice principal, so I asked her what happened, and she told me that I had a seizure. I responded with “what’s that?”. I didn’t even know what a seizure was. After that, I had a few seizures, which always happened while I was menstruating, just like my first one, before I was diagnosed with epilepsy. I was referred to a pediatric neurologist. My neurologist put me on Tegretol, which controlled my seizures to a certain extent. I was not having my seizures as frequently. My seizures reduced from once a month to about once every six months. However, I was still having days where I would zone out into space.
Going into high school, I often felt like an outsider because epilepsy wasn’t something people talked about. I felt abnormal. Summer after grade 10, I had a seizure while I was at work, and it was then that my neurologist decided to add Clobazam. I was now taking Tegretol and Clobazam at the same time. This combination worked so well for me. I went through grade 11 and 12 living life as a regular teenager. I was able to do EVERYTHING my peers were doing. I did an EEG the summer after grade 12 and it showed no signs of seizure activity. My family and I were so happy. My neurologist decided to slowly decrease my dose of Clobazam. In fall, I started to attend University. In December, exam season came and my stress levels were high. I had been seizure free for two and a half years by then, so I had almost forgotten that stress was a trigger for my seizures. On December 5, 2019, while I was on my way to the library to study for my final exam that was in two days, I had a seizure. When I woke up and realized what had happened, I cried so much. It felt as if I was back at square one and I was devastated. It had a major impact on my mental health. After this seizure, I was referred to an adult neurologist and we experimented with different medications for over a year, but none of them worked.
Now, I am back on the same dosage of Tegretol and Clobazam that I was taking in high school and I have been seizure free for 5 months. I am still attending university and I am in my third year as a biology major. However, I am now extra cautious with my stress levels and sleep schedules to prevent any future seizures.
Raising awareness for epilepsy is crucial because it will allow people living with it to feel less secluded. Finding a cure for epilepsy is so important to me because epilepsy is something I have been living with for over 7 years and it affects my day to day life. Although there are medications that help control seizures, the side effects are also difficult to deal with. Finding a cure would change my life.
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.