Samara’s Story
My name is Samara Fernando, I am 16 years old and diagnosed with Epilepsy when I was 12. Despite it only being four years, my life has changed dramatically since the diagnosis, and I am still getting used to life with Epilepsy as a teenage girl. Accept that my life does look different than a lot of the other teenagers I know that I may not be able to do everything they can do, but that is okay! Epilepsy does not have to ruin your life.
I will never forget the first time I had a seizure around my classmates at a new high school and how I felt. No one knew about my seizures because I didn’t want anyone to know - I didn’t want that attention. I was so embarrassed and ashamed of how I looked while seizing. I have tonic-clonic seizures and I was in gym class and when I woke up there were so many teachers around me, I was so disoriented and had no idea what happened or where I was. I was terrified my friends would leave me because I was a “freak.” Most of them had never even heard of Epilepsy, let alone known someone that had seizures. I suddenly found myself being harassed with questions from people I had never met at school. I felt like an animal at the zoo, helpless.
The one positive thing about my peers not knowing about my condition is that I could be the one to educate them and make sure they had the correct information. I even had teachers ask me about Epilepsy because they were curious and were never told anything about it. I have made educating others about Epilepsy a life goal of mine and sharing my own journey is one step.
I remember my first EEG and being told that I had seizure activity. I had no idea what that meant and what was wrong with me. My neurologist suggested I go for a week-long EEG to get more information. After a week of barely getting any sleep, she discovered I was having seizures all day and I was formally diagnosed.
My current medication has been working but that wasn’t without struggles. I had tried another medicine before, but my seizures continued. I was having multiple a day and could barely function. I had had so many and was terrified I was going to die. Thankfully, I switched to a new medication and my seizures are under control. Something I did not know before being diagnosed was how important dosages are and the other effects. I had vision problems and was seeing double because of a too-high dose for a long time and am getting more comfortable with remembering to take my morning and evening meds without being reminded. Medications saved my life and have given me so much more freedom, no one should ever feel ashamed to take them!
A cure for Epilepsy would mean the world to me and more. I tried to think about something I want more than that and I came up short; it is my dream. I would be able to go out and party with friends without having to remember to take medications or if I have a seizure plan. My mother would no longer have to worry about my safety when I am alone. Most importantly, a cure for Epilepsy would end the suffering that I and millions of others face.
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.