Written by Teen Advocate, Sydney Baron
My name is Sydney Baron. I am 17 years old and a Senior at James Campbell High School. I was diagnosed with Epilepsy during second grade after suffering a seizure in the back seat of my moms car while be driven to school. Ever since then I have been taking 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 all in the hopes of never having to endure 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 years between seizures!
I do happen to fall into that category but that does not prevent me from being cautious. I cannot live freely as 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 road to get to school, riding my bike, climb a set of stairs, I always have to ask myself “Do I feel safe?” The whole thing is tiring.
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 HOSA Competition the last two years in a row which is for Health Occupational Students of America. My last few years of High School have been good ones. I was on the Principals list and inducted into the National Honor Society. I recently applied to and was accepted the University of Nevada Las Vegas which is where I will be attending in the fall majoring in Chemistry.
Most recently I attended the “Teens Speak Up!/Public Policy Institute” in Washington DC, as the teen ambassador for Hawaii. I also participated in the National Walk for Epilepsy while there. This conference allowed me to meet with the state 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 stigma and discrimination against epilepsy.
Please help me and others, be a voice and bring awareness and assistance to a much needed cause.
