Noah

Noah has Tuberous Sclerosis Complex: tubers grow throughout his brain and on his heart. Noah was having a great deal of seizure activity and was experiencing a seizure roughly every hour. He was not deemed a candidate for surgery in his native Canada because specialists could not determine with any accuracy where the seizure activity was coming from in the brain. But at the NYU Comprehensive Epilepsy Center, he found help. . "Within a day, they basically came to us and said, `We know which tuber is firing off and we are going to resection it,'" says his mother Karen. Noah underwent a three-stage operation at NYU Langone Medical Center to remove one of the tubers in his brain. Since the last day of surgery, Noah has not had another seizure and lives a joyful life.

Jorge

Jorge is a strapping fork lift operator, a father of a beautiful teenage daughter and an active volunteer at NYU faces.  Since his successful surgery almost 15 years ago, Jorge’s life has taken on a shine brighter than his smile. His outlook is positive, his relationships with those he loves are strong and his work life is fulfilling. He keeps his energy up by regularly riding his bike around town and watching what he eats. The clarity and calmness he feels give him a sense of pride.  "The real me is coming out." says Jorge "Before I was down on the ground, real low…hopeless. Now all I can see is up! I just look forward and don’t have time to look back!"

Marne

When I was four years old my twin sister experienced her first grand mal seizure. Twelve years later, after she grew out of the disorder, I experienced my first petit mal seizure. At first, I didn’t think twice about it. I figured it was any other teenager, drown-out-the-world space out. However, the episodes became more and more frequent. Mid-conversation I would stop speaking or begin talking about something completely irrelevant and would not remember what I had said once I came out of it. Our school nurse would offer me aspirin and brush it away. But the episodes continued so my family and I decided look into them. That’s when I was introduced to Dr. Devinsky and faces.

After many tests and observations, I was diagnosed with epilepsy. My school nurse said, “don’t worry, I won’t tell anyone.” I felt ashamed and alone. I kept thinking I was different from my peers and that I had this terrible, incurable brain disorder that would ruin the rest of my life. “What did I do to deserve this”, I would wonder. Then I decided I could either wallow in my own self-pity or I could embrace the fact that I had epilepsy and do something about it. I chose the latter and my mother and I decided to devote our time to learn everything about epilepsy and the brain.

My mother and I attended many faces lectures and not only learned about epilepsy, but, by observing the large number of attendants, learned that I was not alone. Because of faces I was introduced to so many inspiring people, both children and adults, who refused to give in to self-pity and challenge the disorder. These patients would not let epilepsy interfere with their quality of life, and neither would I. faces taught me to challenge myself, learn as much as I can about epilepsy and never see myself as different or less capable because of my condition.

Now, I am interning with faces and continue to learn about epilepsy. I hope to educate people about epilepsy and help those afflicted with epilepsy realize that they are able to achieve all that they set their mind to just as faces taught me to never give up.

Leanne

Leanne is a long-time patient of the NYU Comprehensive Epilepsy Center. Diagnosed in 1990, she has been managing her epilepsy with the support of NYU's amazing medical team and the encouraging, understanding people at FACES.

Leanne actively volunteers and supports FACES with spirited enthusiasm. It is her goal to be a strong advocate in order to raise awareness of epilepsy and to find effective treatments.

To strike a balance with an occupation in a fast paced financial environment and her volunteer work, she is committed to her passion for traveling, yoga, and most importantly, spending time with her cherished friends and family who provide unconditional love, patience, and humor.

Marie

As a young child my parents took me from doctor to doctor in hopes of discovering and treating my ailment. After 8 years of treatments that lasted only a few months, I was finally diagnosed with Epilepsy. I would frequently become ill in class and would awake embarrassed at home or in a hospital. At last, because of the proper diagnosis I could be treated with the appropriate medication. Even as an adult I was embarrassed by my condition. Having to leave work in an ambulance or having a seizure on the bus was humiliating. Epilepsy was taking over so much of my daily life! Fortunately, I found faces! Through NYU I was given the proper care that was needed and faces as the voice for epilepsy. My new medical team has controlled my epilepsy for many years and has granted me a new lease on life!

I am grateful to faces for the network of people they have introduced me to.  I have now grown to admire others with the same condition as their situation has been even more difficult than my own.  I am constantly updated with the latest medical facts and am no longer embarrassed that I have this condition thanks to NYU and faces.  faces has shown me that I am not alone but actually have many peers experiencing the same mental and physical anguish as I do.  Without letting the frustration that comes along with Epilepsy stand in my way, I am now able to accomplish financial analysis at the office, be a mother and wife while remaining committed to my hobbies.  Confronting my illness rather than denying it, seeking proper medical attention and abiding by it coupled with complete moral support from my loved ones has enabled me to orchestrate it all effectively.  faces is now my voice to let others know about my own experiences and that there is hope for all of us with this condition!