Infantile Spasms Awareness Week

Infantile Spasms (IS), also known as West Syndrome, is a rare form of age-specific epilepsy that usually presents itself in children within the first year of life. Early diagnosis and treatment of Infantile Spasms is of the utmost importance, and in many cases can ensure a more positive prognosis and a better quality of life, and significantly increases the chances of achieving reaching normal child development milestones.

Watch the videos below and check out our blog to hear a firsthand account of what it’s like to have a child with Infantile Spasms and to learn more about how Infantile Spasms (IS) are diagnosed, what signs to look for and what treatments are available.

In honor of Infantile Spasms Awareness Week, please share the videos below with friends and family in order to help us raise awareness about this rare form of epilepsy, and about the importance of early diagnosis and treatment.

My Epilepsy Story

I recall the day I had my first seizure very well. I was walking into the room where a school-wide mass was taking place when suddenly, as the music began, I became very anxious. Everything seemed to be in slow motion – even the music slowed down and I started to shake. I did everything I could to continue standing but the pain was too great. I slowly dropped to the floor. At one point, I thought I was dying (I thought this was the end). I woke up to the comforting smiles of my middle school’s vice-principal and nurse. My body was physically drained. They told me I had a seizure.

What was a seizure? For someone who had no bad medical history, why me? The shock of the diagnosis of Epilepsy was a bit overwhelming in and of itself, but then I had to learn all about it. All of it seemed so surreal. Over the next two years I went through countless seizure-drug combinations, some of which drastically changed my mood. At one point, brain surgery was discussed.

I was already struggling with anxiety but the diagnosis only made things worse. I constantly would wonder “When would my next seizure happen?” I was terrified. Seizures didn’t just affect me physically, they affected me emotionally and socially. During Middle School, I was nervous when I wasn’t around an adult. Also, I felt other students didn’t really understand me, some were even scared to have me around. There was always a sense of guilt and that I just caused ‘extra work’ for everyone; often I just wanted to disappear.

In the 9th grade I starting to become very socially withdrawn and didn’t feel accepted. I began to spend more time composing and engineering music, whether it be in the hospital, my room or a local studio. I caught a break and started working with major songwriters and recording artists, while continuing school. Throughout high school, I only had a few people I could confide in. There aren’t a lot of people who will understand those daily struggles. Most never saw the tears or the endless nights in the hospital.

When I graduated June 2014, my seizures were finally controlled by medication. I recently started college, focusing on graphic design, while continuing on music collaborations. I consider myself extremely blessed to have had great support from family, teachers, doctors and school nurses.

My dream is to create a career in the arts, one that will help inspire other struggling artists to persevere and push beyond the seemingly hopeless circumstances they sometimes face in life.

Me and My Epilepsy – Mrs. Gotham City

My name is Alexandra DeBourcy and my epilepsy is a part of my life, my history and my future.

I was diagnosed with epilepsy at the age of five, when my parents noticed I was having “head tics.”  Shortly after starting my epilepsy medication, I stopped experiencing myoclonic tics. As a 5 year-old, I did not understand the full extent of my diagnosis, but I recognized a change in my lifestyle. At that very young age, I had to swallow non-chewable prescription medication, undergo many boring diagnostic tests and take monthly blood tests. The blood tests were the worst. Even at five, I knew my epilepsy diagnosis was changing my life.

Despite years of living seizure-free, one day during class when I was in the 7^th grade, I had my first ever grand-mal seizure. When I awoke, I was still in school, surrounded by working paramedics, as well as teachers and school administrators whose faces were filled with panic and fear. It took me a while to understand I had just had a seizure. At the time, I could only think about how my peers, who also witnessed my seizure, would judge me. Prior to returning to school, I called some of the students in class. It was easier to explain my epilepsy on a one-on-one basis. It helped. I don’t know if my phone calls helped any of my classmates, but it I do know it helped me. It gave me strength to face my schoolmates. I had more grand mal seizures in school during my adolescence, but I continued to open up and discuss my epilepsy with classmates and adults.

Luckily, I remained seizure free during high school and most of college, but my epilepsy was still a part of me. My parents and doctors reinforced the need for me to communicate my disorder to my friends, teachers and professors. No matter how long I went without a seizure, I had a different lifestyle than my peers. I was approaching the age where my actions, especially as a driver, had a greater effect on the lives of others. So, I continued to use communication, and levity, to introduce my epilepsy to other people.

After graduating from Syracuse University, I started having grand-mal seizures, again. This added additional considerations, as I was about to begin my career search. My epilepsy stabilized, and I moved to New York City. I loved New York City, and it had a public transportation system I could depend on. I was able to find work at an ad agency with an insurance plan. Since I had been denied a private insurance due to my pre-existing condition.

Unfortunately, I continued to experience seizures through out my twenties. I also experienced the Great Recession, the election of our first Black President, and falling in love with my husband. Eventually, my doctors and I decided to change medications. I had seizures at work. Some of my colleagues were empathetic; others were not. I sometimes felt stigmatized in my work environment. Due to privacy laws, it was hard for employers and colleagues to talk openly with me about my epilepsy.

Eventually, I left advertising. It was not the best career environment for my epilepsy. I decided to change careers and become a gemologist. My change in careers has allowed me to work in an environment more suitable for my epilepsy. I also work very happily with diamonds, gems and beautiful jewelry. It also has provided me with more time to devote to helping others with epilepsy.  I now have the chance to represent the Epilepsy Foundation of Metropolitan New York as Mrs. Gotham City in the upcoming Mrs. New York America pageant.

I have had to accommodate my epilepsy throughout my entire life and, many times, I have resented my epilepsy. However, the happiest times in my life occurred when I worked with my epilepsy without shame. It is embarrassing to have a seizure in school or at work. It is awkward to tell peers about a personal neurological disorder. Furthermore, it is difficult to disguise EEG electrodes for three days straight. So, as an epileptic, I know I can empower myself by starting the conversation on my epilepsy. I want to continue and expand the conversation with others living and affected by epilepsy. It is the best way I know to keep myself safe and happy. We need to discuss new treatments, gather community support and take the stigma away from epilepsy.

Epilepsy and Driving

Dear EpilepsyNYC Community,

Because of my epilepsy, I have never driven a car.

When I was around 17 years old, like many of my friends at that age, I was saving my allowance with the hopes of using the money to buy a car. I remember saying to my parents “When I drive, I’ll get in my car and go everywhere.” Driving represented freedom.

Around this time, the medication I had been on since I was diagnosed (age 11), wasn’t working like it once did. My doctor at the time, decided to put me on a new medication without taking me off the medication that was no longer working. As a result I got really dizzy at school and fell down the stairs; I was over medicated. I ended up missing school for a week, and needless to say, changed doctors after that.

It was my new doctor who broke the news: I wouldn’t be able to drive. I remember taking my car money out of the tin can it was in, feeling crushed. My dream of driving was gone. Even when I think back on it, after everything that has happened since then, I still get a little sad.

I’ve met people with epilepsy who drive, but epilepsy is different for every person and every state has different rules about driving with epilepsy. Here in New York you have to be seizure free for a year and your doctor has to approve. Unfortunately, I have never spent a full year seizure free. And though there are bigger problems I have with epilepsy, I still wish I could drive.

Many of my friends tell me, “Don’t worry Kate, driving is overrated,” and I can understand their perspective, between the gas prices and traffic jams… But maybe they are simply trying to make me feel better. I can’t believe driving is overrated, and perhaps that is because I’ve never driven; I always have to be asking for a ride to go anywhere, when for almost everyone else, it seems as easy as just hopping into a car.

Like many of us do in New York, I complain about public transportation and taxi drivers, but I know that it could be worse. I am lucky to live in a city where I can get around easily. I can walk, take the bus, train or take a cab to get where I need to go. I hear about people living in places where it takes them 30 minutes just to get to the grocery store. I know it would be much more difficult for me if I lived somewhere where it was hard to commute. I am grateful, but some days are easier than other days. Some days I don’t feel comfortable taking public transportation or cabs.

Around 8 years ago, when I was on my way to school, I had a seizure on the bus. And 3 years ago, I had a seizure in a cab. I can only assume the cab driver didn’t know what to do or got scared, because he drove away and left me on the street, only a few blocks away from where I started.

It is frustrating when epilepsy controls your life, and ones ability to drive is certainly something epilepsy controls. It prevents you from freely doing what you need to do and going where you want to go.

I do hope one day I will be able to drive, but I also don’t want to put myself or anyone else on the road in danger. On the news, my parents and I heard that they are making cars that drive themselves. Maybe one day I can use one of those?

If one day I can drive that will be one less thing that my epilepsy controls.