Learning to Live with Epilepsy

My name is Sydney Baron. I am 18 years old and currently a freshman at the University of Nevada Las Vegas. I was diagnosed with epilepsy during second grade after suffering a seizure in the back seat of my mom’s car on the way to school. Ever since then I have taken medication regularly, multiple times a day.

Sometimes I feel trapped by my epilepsy, but I try to remind myself that I am one of the lucky ones. My seizures are infrequent and are somewhat controlled with medication, unlike others who even with medication still suffer severe seizures and have their daily lives wracked with chaos. I believe one day there will be a cure and that I won’t have to take medicine every single day for the rest of my life to prevent another seizure. I find comfort in the fact that most people with epilepsy lead pretty normal lives. Did you know that 80 percent of people living with epilepsy can be significantly helped by modern treatments and therapies? And some go months or even years between seizures!

I do happen to fall into that category but that does not prevent me from being cautious. I cannot live as freely as many others. My independence has been taken away. I cannot swim alone, I need to leave the bathroom unlocked especially when taking a shower, most activities need to be chaperoned and I put others at risk if I choose to drive a car.

It is common for people with epilepsy, especially children, to develop behavioral and emotional problems because of seizures. I found that because I was embarrassed, frustrated, tired, and feeling ill a lot, that it has caused emotional difficulties for me. Many people with epilepsy also live with a constant fear that they will have another seizure. Before I do anything like crossing the street to get to school, riding my bike, climbing a set of stairs, sitting in a classroomI always have to ask myself “Do I feel safe?” The whole thing is very tiring.

Current statistics show one in 26 Americans will develop epilepsy in their lifetime. An estimated three million Americans and 65 million people worldwide currently live with epilepsy. Each year at least 200,000 people are diagnosed with epilepsy.

I have not let epilepsy or learning disabilities I experienced at a young age stop me from reaching my goals. I try to be as normal as possible. I have competed in dance competitions, participated in school activities, and I have joined several clubs at school. I have competed in the National Health Occupational Students of America (HOSA) Competition the last two years in a row. My last few years of high school have been good ones. I was on the Principal's List and inducted into the National Honor Society. I attended the “Teens Speak Up!/Public Policy Institute” in Washington, D.C., as the teen ambassador for Hawaii. I also participated in the National Walk for Epilepsy while there. This conference allowed me to meet with senators and other legislators at the Capitol to share my story and advocate in support of the Epilepsy Foundation’s legislative goals. This includes greater funding for a cure, better treatments and programs, improved access to medical care and treatment and to help stop the stigma and discrimination against epilepsy. I am currently attending the University of Nevada Las Vegas majoring in chemistry, with the hopes that working in the research field will allow me to contribute to one day finding a cure. I have also started assisting with the local Epilepsy Foundation of Nevada.

November is National Epilepsy Awareness Month. Please help me and others, be a voice and bring awareness and assistance to a much needed cause. For more information about epilepsy, visit www.epilepsyhawaii.org

For Epilepsy Awareness Month, the Epilepsy Foundation of Hawaii will be hosting their 3rd annual Living Well with Epilepsy Conference on Saturday, November 14, 2015 from 9 a.m. to 3 p.m. This free conference is for people living with epilepsy as well as those who want to learn more about the neurological condition. Click here to register.