July 2012 E-Newsletter
Around The Globe with Jacqueline French, MD
Dr. Jacqueline French wears many hats, in relation to her demanding roles as Professor in the Department of Neurology, and Co-Director of Epilepsy Research and Epilepsy Clinical Trials at NYU Comprehensive Epilepsy Center. Her work has taken her to virtually every part of the world. In fact, these past 6 months, she has trotted New York City and around the world, masterfully juggling her schedule.
As part of the epilepsy study consortium to improve clinical trials, train investigators and perform clinical trial trainings, she has traveled to Budapest, London and made her way around the globe to Sydney and Singapore. Being chair of the International League Against Epilepsy North American Regional Commission, teaching activities and meetings to improve the quality of care, and to visit epilepsy clinics have taken her to Antigua and Haiti.
In the coming months, Dr. French will travel to Rome and London to meet with colleagues to discuss research initiatives and joint research collaborations. All these point to our commitment to change the landscape of epilepsy globally, while attempting to synchronize worldwide efforts on training and treatment for living with both epilepsy and seizures.
Dr. Dan Friedman talks PAME and SUDEP
The first Partners Against Mortality in Epilepsy (PAME) Conference took place June 21-24, 2012 in Evanston, Illinois and FACES was a proud co-sponsor of the event, along with the Epilepsy Therapy Project. This conference was unique in that it brought together clinicians, clinical and basic science researchers, advocacy groups, patients, and family members to discuss mortality in epilepsy. It has been known for some time that people with epilepsy have an elevated risk of dying compared to the general population. Epidemiological studies have shown that most of the excess mortality in people with epilepsy occurs in the first 40 years of life and within the first decade of diagnosis. While some of these deaths can be explained by progressive causes of epilepsy such as brain tumors or neurodegenerative conditions, epilepsy itself is associated with increased mortality.
Epilepsy-related causes of death include accidents, suicide and sudden unexpected death in epilepsy (SUDEP). These deaths typically affect people in the prime of their lives. If conceptualized in terms of years of potential life lost, the public health burden of epilepsy-related death is higher than that of more common diseases that affect the elderly such as Alzheimer disease or Parkinson diseases.
Imaging Brain Connectivity in Epilepsy: Focus on the Septal Forebrain
By Tracy Butler, MD
Epilepsy is a disease in which electrical activity is propagated abnormally through brain networks. To understand epilepsy, it is essential that we understand these networks. My FACES-supported research project combines several cutting edge neuroimaging methods (functional and structural MRI and Positron Emission Tomography [PET]) to study these networks.
I am particularly interested in a small region at the base of the front of the brain called the septal forebrain (or septal nuclei.) This region has been well studied in animals, but not in humans, probably because it was once incorrectly considered vestigial (like the appendix.) However, I believe this underappreciated brain region could be very important in epilepsy. This is because the septal forebrain plays a unique role as a brain “pacemaker” capable of generating and controlling rhythmic electrical activity in the hippocampus (a brain region commonly involved in seizures) as well as other parts of the brain. In animals, electrical or chemical stimulation of the septal forebrain is antiepileptic.
My FACES-supported research will determine how the size and connectivity of septal forebrain differ in people with versus without epilepsy. This could be a first step towards one day harnessing the pacemaker abilities of the septal forebrain to bring abnormal network propagation of electrical activity under control in people with epilepsy.
RECIPE: Zucchini Pappardelle
by Courtney Schnabel, MS, RD, CDN
Summer is in full swing, which means beaches, BBQs and pools are popular hang outs. This summer, don’t let heavy food weigh you down – here is a fresh new take on pasta to bring with you wherever you may be hanging out! This recipe provides 1⁄2 the calories and carbohydrates as a similar portion of pasta. In addition, zucchini is high in fiber, vitamin A, folate and potassium.
Zucchini Pappardelle, Makes 4 Servings
Nutrition Facts (per serving):190 calories, 11g fat, 17g carbohydrate, 5g protein and 5g fiber)
4 large zucchini
3 tablespoons extra virgin olive oil
2 cloves garlic
4 ounces dry white wine
2 cups cherry tomatoes or sliced tomatoes
1⁄2 medium onion
Parmesan cheese to taste
1. Slice zucchini lengthwise with a mandolin or a peeler (slices should be long and thin and should resemble a thick ribbon). Discard center with seeds.
2. Heat olive oil in a pan. Dice garlic and onion and add to the pan – cook until tender
3. Add zucchini ribbons to the pan and crisp. Add a pinch of oregano, salt and pepper.
4. Add tomatoes and cook until soft. If the pan becomes dry add low sodium chicken broth.
5. Add the white wine, cook until reduced by half.
6. Simmer until desired thickness
7. Top with parmesan cheese, fresh basil
“Maria, what you experience was an epileptic seizure.”
“Complex, partial seizures.”
These were terms that were, in my opinion, being overly utilized by doctors in the fall of 2007. I was 23 years old, a recent college graduate and ready to go out and start my life without anything holding me back. However, I spoke too soon. I was thrown a curve ball and soon found that life was not as easy for me as it was for my fellow classmates and friends.
Up to that point, I had gone my entire life without ever having a seizure. All of a sudden, my life changed. I was 23 and I developed epilepsy. What I didn't realize was that although I finished school, I now had to learn a completely different way of living.
I had multiple seizures a day. My driver's license was immediately revoked and I had to live at home while I watched others my age move out into the "real world." It was almost like becoming a teenager again and losing any independence I felt I had earned. I had just started a job before being diagnosed with epilepsy; I was having seizures at work, on the phone, walking down the hall, and out at lunch. But I carried on when the seizure was over and worked hard to make sure people knew that I was still "me." The seizures would last about a minute, but my actions during that minute would consist of twitching, grabbing, jolting, hitting myself and not being able to respond to whomever else was present.
About a year had gone by when I turned 24 and decided I needed to do something about my situation. There were two choices: I could try to live with my epilepsy, or let my epilepsy control and define me. I made up my mind and I rented an apartment where I would live with a frend on the weekends, worked harder at my job, and didn't take any time off for seizure activity.
As time went by, I started to become more aware that a life with children in my future might be challenging. I then became consumed with learning if surgery was an option for me and what that meant. I was all set on the route for surgery, but then began to second guess myself. It wasn't until a year later that I finally decided to go ahead with it. It was the hardest decision I have made so far in my life. But my decision to become seizure-free, along with the opportunity to live as close to my pre-epileptic life as possible, began to outweigh my fears.
In the spring of 2009, I went ahead with the surgery and to date, I haven't had a single seizure. I am now 29 years old and trying to make up for lost time. I felt like a 17 year old getting her license for the first time and though I still think of myself as living with epilepsy, I have not had a seizure. I am still on medication and I know there is a chance they can come back at any time.
My 20s were spent differently than those of my friends and my family. While others set out finding themselves and building a life in the "real world" after graduating college, I was hit with a new reality of living with epilepsy. This is something that has made me rethink everything in my life. If there is ever an obstacle that I come across now that is difficult, I say to myself, "Piece of cake. I had seizures. I had brain surgery - I can handle anything!" And, I truly believe it. People with epilepsy are strong in nature as it takes a special person to be able to live through what we all go through on a daily basis. Once I realized that, I felt stronger, and hopefully you will too after reading this.
Something that was said to me in 2007 didn't have as much meaning to me as it does now: "Some people are beaten by it, some grow stronger, and some change because of it. You are going to be stronger because of it and you just have to realize that." I didn't think it was possible. Now, I truly believe I have become a strong person. Epilepsy has changed who I am. I never let it define me, however. I would not be the person I am today with epilepsy, and that is someone who doesn't ever back down, will fight to the end, and refuses to be scared.
- Maria Torsone
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