Holiday Greetings!

My name is Emily, and I am 16 years old. On behalf of Atlanta Neuroscience Foundation (ANF) and Dr. Seiden, my doctor at Atlanta Neuroscience Institute (ANI) , I’m writing this letter to share my story, to help others understand what it’s like living with epilepsy, and how it has affected my life, my social world, and my future and to seek your support.

I was diagnosed with epilepsy a little over a year ago. At first, I did not understand what that really meant. All I knew was that one day, out of nowhere, I had a seizure. I felt scared, confused, and ashamed. It was hard to accept that something was happening to me that I could not control, something that no one could see but would impact my entire life.

The hardest part of living with epilepsy has been how it has changed everything. My social life is not the same anymore. I used to be able to go out with my friends, to parties and hang out without worrying about anything. But now, I always have to think about the possibility of having a seizure, and that fear keeps me from joining in the way I used to. I have had to cancel plans more than once because I did not feel safe or because I had a seizure without warning.

It is hard for my friends to sometimes fully understand. They do not always know what to do or how to act, and that makes me feel even more isolated. I wish I did not have to remind people to be careful or explain that I cannot stay out too late. It is tough feeling different.

School has not been easy either. I have always loved being involved in extracurricular activities, whether it was drama club, volunteering, or sports. But after my diagnosis, everything changed. The idea of participating in something physically demanding, like running or dancing, makes me anxious. What if I have a seizure while I am performing? What if my friends do not know how to help me? I have had to drop out of some activities because I could not risk it, and I feel like I am losing pieces of myself.

Even in class, there are days when I am exhausted from medication or just trying to keep track of everything. There are moments when I cannot focus because I am worried about when the next seizure might come. It makes me feel like I am not living up to my full potential, and I hate that feeling. I want to be the best student I can be, but epilepsy sometimes holds me back.

I know that living with epilepsy does not define me, but it sure feels like it sometimes. I am trying to stay positive and find ways to adapt, but it is hard. I still have dreams, and I want to be involved, to live my life fully, and to be a part of things like I was before. I just need a little more understanding and support to get there.

One last thing. Please consider making a donation (HERE) to help people with Epilepsy continue to receive, as I have, great care and support at ANI. Thank you for listening to my story. I hope that by sharing it, I can help others who are living with epilepsy feel less alone. And, just maybe, we can start to see a world where people do not have to hide or feel different because of things like epilepsy.

Sincerely,

Emily