My Epilepsy Journey
by Danny Rosenfeld
It was President’s Day weekend in February 1996 when I was diagnosed with epilepsy at Robert Wood Johnson Hospital in New Jersey. I was only 11 years old but remember the day vividly. I woke up with a migraine that morning and told my mother, who insisted that I lay down. The next thing I remember is waking up in the hospital with my sister sitting alongside my bed and my mother, with her head on my bed, praying that I would wake up. I was alarmed and confused.
Over the years, I have seen doctors in New Jersey and in Florida in hopes of controlling my seizures. In 2009, after a series of major seizures, specialists at Tampa General Hospital’s Epilepsy Monitoring Unit thought that I might be a candidate for brain surgery. Unfortunately, after undergoing several tests, it was determined that I was not a good candidate for surgery. My seizures were stemming from a very deep section of my occipital lobe – making the surgery too risky and with no guarantee that it would be effective. Instead, I had the VNS device (Vagus Nerve Stimulator) implanted which has helped manage my seizures.
My journey with epilepsy has included many challenges: not being able to drive; finding stable employment; sharing my epilepsy diagnosis with people; having a circle of friends who will support me; managing my medication; and reducing stress to avoid triggers leading to a seizure.
Overcoming these challenges was my goal and I was determined to help other people living with epilepsy. That was why in 2010, my parents and I co-founded the Epilepsy Walk and established an Epilepsy Support Group in Naples, FL. Our goal was to bring epilepsy awareness to our local community. Over the years these efforts have raised more than $700,000 to help people in southwest Florida.
There are more than 600,000 people in Florida diagnosed with epilepsy. And I, for one, refuse to let my diagnosis define who I am! As a member of the JoshProvides Epilepsy Support Group, I advocate and support other “purple warriors” who overcome challenges every day! We all “seize the day.”
