February 2016

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FEBRUARY 2016 FACES E-NEWSLETTER

  1. RECIPE OF THE MONTH
  2. WAY TO GO FRANKY!
  3. EPILEPSY POEM
  4. A TALENTED FACES ARTIST
  5. DR. BLUVSTEIN IN ANTIGUA
  6. AMERICAN EPILEPSY SOCIETY CONFERENCE 2015
  7. SEIZED- INSIDE THE MYSTERY OF EPILEPSY SCREENING NIGHT REVIEWS
  8. FACES APARTMENTS 2015 STATISTICS
  9. 2015 COLLEGE SCHOLARSHIP RECIPIENTS IN REVIEW
  10. FUDGERAISER
  11. LIVING WITH EPILEPSY
  12. NOTEWORTHY NEWS

1) RECIPE OF THE MONTH

CLICK HERE TO VISIT THE NUTRITION SECTION OF OUR WEBSITE!

From Laura, mom to Cadence:

After being on the ketogenic diet 3+ years and developing lots of recipes through trial and error, I hit on one that's just too good not to share. My mission in creating this recipe was to develop a moist cake muffin containing all the fat, protein, and carbs in a single serving. I also wanted the muffins to freeze well or sit on a counter for a few hours without spoiling. Most of all, I wanted Cady to LOVE them!

The following is a 2:1 recipe, about 400 calories. This would make 1 mammoth muffin or 2 regular-sized muffins. Generally, I multiply this recipe by 6 and make 12 regular-sized muffins.

BANANA CHOCOLATE CHIP MUFFINS

Ingredients:

  • 7 g cream, 36%
  • 19 g fresh banana – mashed
  • 4 g coconut flour, Bob's Red Mill Organic
  • 17 g yogurt, Dannon Light & Fit Carb/Sugar Control (vanilla or strawberry work equally well)
  • 22 g Egg Beaters, original
  • 5 g canola oil
  • 31 g macadamia nuts, dry roasted with salt – ground
  • 4 g melted butter
  • 7 g Nestle semi-sweet chocolate chips (mini chips work best)

Directions:

Insert paper liners into muffin tins (mammoth or regular). Preheat oven to 350 degrees. In bowl, mix melted butter, cream, yogurt, egg beaters, oil, and mashed bananas. Add sweetener to taste (1 tsp. Sweet 10).

In small bowl, toss chocolate chips with coconut flour (to prevent them from sinking to the bottom of the muffin). Stir in finely ground macadamia nuts. Next, add one pinch each of salt, baking soda, and baking powder. Fold wet ingredients into dry ingredients. Mix until just blended. Pour into paper-lined muffin tins. Bake for 25 minutes until toothpick inserted in center is clean. Muffins will puff up and will be golden on top.

This recipe has been provided from The Charlie Foundation

Be sure to check this recipe and consult with your dietitian for any modifications. Ketogenic diets are highly individualized treatments and this recipe should only be used as a guide.

2) WAY TO GO FRANKY!

Frankie was adopted eight years ago from China and diagnosed with intractable epilepsy at 5, having undergone five surgeries. Due to his condition, he was granted a wish two years ago to visit Walt Disney World in Orlando, Florida, from the Make-A-Wish Foundation.

Frankie spent most of his 2015 holiday season raising close to $5,600 to help give back to the Make-A-Wish Foundation. To give back, Frankie started a holiday letter-writing campaign last month that brought 2,699 letters to Santa for Macy’s Make-A-Wish Believe Campaign. Macy’s donated a dollar to Make-A-Wish Foundation for every letter dropped off at in-store boxes or sent online through the end of December with $2 per letter given for National Believe Day.

Letters were written by peers throughout his school district, local Girl Scout troops, and Frankie’s family. To collect additional letters, he worked a booth at his school’s holiday craft fair, where he also sold $200 worth of ornaments.

In addition, Stony Brook University Men's Soccer Team made Frankie their honorary team captain for his accomplishments. You can watch the video by clicking here.

CONGRATULATIONS FRANKIE!

3) EPILEPSY POEM

By: Alyssa D’Amico

EPILEPSY

Epilepsy is a part of me You can take it or leave it Because it may not go away As a matter of fact It may be here to stay Am I ok? Yes I am! Standing up straight Facing the reality of life Accepting every part, and possibility for it Back to normal Whatever that means Let me continue with what I am going to do Epilepsy is a part of me Which makes me unique In a different way Keep my head up And never give up Cause winners never quit Quitters never win And I chose to be a winner Continuing to carry on Have fun, enjoy myself, do favorite things Try to make sure there is a smile on my face But emotions fluctuate Not every day is perfect Life is like a ride going up, and down Researching the condition reminding myself What the chemistry is When a seizure happens Stay strong There is nothing wrong

4) A TALENTED FACES ARTIST

TAKE A LOOK AT A TALENTED PATIENT’S DRAWING OF DR. JUDITH BLUVSTEIN AND HERSELF!

5) DR. BLUVSTEIN IN ANTIGUA

FACES received a gift from the Francis Archibald Wentworth Walter Fund for Medical Aide to the Islands of Antigua and Barbuda at the Tides Foundation to send doctors and nurses from the NYU Langone Comprehensive Epilepsy Center (CEC) to the island of Antigua to train medical staff and provide care to pediatric patients with epilepsy. The Tides Foundation's fund honors Antiguan artist Frank Walter, and Jackley Peters, Attache to Ambassaor Webson. This gift provided funding to send two epileptologists–Dr. Derek Chong and Dr. Judith Bluvstein - one epilepsy nurse practitioner-Nidia Ortiz and one EEG technologist – Ameeta Grover - to the island to run a 4-day epilepsy clinic to evaluate and care for children and adults on the island with epilepsy. As Antigua is lacking a neurologist, this gift is particularly important to the citizens there.

Dr. Judith Bluvstein, Ricora,
and Nidia Ortiz, RN

It was a busy medical mission week for us. Close to 200 patients were evaluated and nearly 70 EEG studies completed. As a doctor, I faced some challenges that I have not encountered since my years of medical school back in Argentina. Most of the patients I saw had limited documentation of prior medical history. The children I saw were brought to their visit by an individual that was not a parent (like a teacher, or a family friend). I did not have the luxury to view patient’s recent medication blood levels. Most of the patients I saw never had imaging studies or genetic tests done. In New York, these types of results are at my fingertips with the touch of a button and they help me in the decision making process. I was starting to feel that practicing in New York makes being a better doctor so much easier. But, I was wrong. Even in challenging situations with little resources, I came to learn that a difference can be made.

A girl named Ricora saw me on a Thursday, 11/12 and was brought by her father. Her mother lives in Curacao and she had moved to Antigua a few months back to attend a local school. Her father took wonderful care of her. He knew that she was having academic and developmental difficulties. When he heard that she could be seen by a neurologist, he didn’t hesitate to take a day off of work and excuse his daughter from school.

I was taking much longer than usual to see patients, including the ones before Ricora. I had to document everything by hand and I wanted to be very detailed for each patient. I knew that optimal documentation would mean better care by their local pediatricians from that point on. Every patient got a full medical note with as much information as I could provide. Nidia Ortiz, RN was writing long letters to each patient’s pediatrician with all the information documented in my notes with the diagnosis, the EEG results, the decision making process, the medication plan, and how to move forward with each patient. I wanted each child’s pediatrician to have a clear plan of care after we left the island. Every letter had to be legible and my email address was provided for the pediatrician so they could reach out to me.

Ricora and her dad waited over an hour just to be seen. I took close to one hour to get to know her. It was clear to me she was having seizures. Her father did not know that. After about 10 minutes of me explaining to him what I feared, he told me “Doctor, I have no idea of what are you saying”. I could tell he wasn’t in denial, he just never saw her having a convulsion. This is not uncommon to hear in other places around the world, even in the USA. For many, epilepsy is when people have convulsive seizures. Ricora’s dad and I talked about the brain, seizures, treatments and overall prognosis. We talked about how seizures can be accompanied by developmental and learning problems. He never witnessed Ricora having a convulsive seizure, but he knew that she was doing poorly in school.

I talked to Ricora and explained that she needed an EEG. She was a little apprehensive about the test, but she liked the rainbow colored cables and got some lollipops from our wonderful EEG technician, Ameeta Grover. All was going well, despite that we were now close to the third hour of her visit. Unfortunately, we ran into some technical difficulties and we could not get a readable EEG tracing. I talked to her dad and explained that she needed to come back on Friday, hoping we could get the much needed EEG reading. I went to bed that night pretty convinced that I wouldn’t see her again. I suspected that earlier her dad found my explanations too vague and he never really saw any seizures happen. I was pleased to see that on Friday they came back to the Clinic! We got the EEG going, but all I could see were some suspicious discharges. This was certainly not enough to get her father on board to commit her to medication prescribed by a doctor he just met, a doctor he perhaps would never see again. During the EEG, I showed Ricora how to hyperventilate while we were recording the test. Hyperventilation can sometimes trigger seizures and we practice this simple activating procedure routinely in New York.

A seizure finally happened! Ricora stopped talking, stared, and had subtle body shaking. I asked her dad if he had seen other episodes like the one she was having right there and he said that he DID see many, multiple times a week. I showed him the EEG. I could see trust, sadness and a hint of closure in his eyes. Ricora was started on a daily anticonvulsant and went home with a clear treatment plan. Her dad was now so much more knowledgeable.
That warm and unexplainable feeling that drove me to become a doctor in the first place flew with me back to New York.

6) AMERICAN EPILEPSY SOCIETY CONFERENCE 2015

Epilepsy remains one of the most common neurological conditions, affecting one in 26 Americans in their lifetime, with one-third having a form of the condition that resists treatment or effective management. With those statistics in mind, more than 5,200 neurologists, scientists, nurses and health professionals came to Philadelphia December 4-8 for the 2015 American Epilepsy Society (AES) Annual Meeting to discuss new discoveries and emerging technologies that can lead to more effective treatment.

“AES hosts its Annual Meeting with one goal in mind -- to provide our broad community of epilepsy professionals with world-class education in order to take our understanding of epilepsy to the next level,” said AES Executive Director Eileen Murray. “Thanks to our board, planning committee, members, speakers, exhibitors, attendees, and staff, we accomplished our goal.”

The HEP team. Left to right;
Kevin McKenna, Sabrina Cristofaro.
Rachel Hennessy & Vicki Mays

This meeting marked the largest ever in its 69-year history, drawing attendees from all 50 states and more than 60 countries. During the four-day event, AES organized more than 100 symposia, lectures, and platform sessions and more than 1,200 research abstracts were presented. The meeting also featured a sold-out exhibit hall with nearly 200 exhibitors from major therapeutic and research companies and not-for-profit organizations.

Popular topics at the Annual Meeting included:

Pharmaceutical CBD (cannabidiol) for severe epilepsy -- Global interest is growing in using CBD for children with severe epilepsy, and three studies presented at the meeting looked at safety and efficacy in the largest trial of CBD to date.

Personal monitoring devices – Three personal monitoring devices unveiled at the meeting offer biometric recording technology that could allow patients to monitor clinical and subclinical seizure activity in the everyday home environment and get advance warning before a seizure strikes.

Personalized medicine reveal new targets for epilepsy - Technological advances ranging from gene editing to next-generation sequencing offer unprecedented access to the human genome and promise to reshape the diagnosis and treatment of epilepsy.

Better management options for status epilepticus in children -- A medical emergency with a high mortality rate, status epilepticus requires prompt treatment, but what constitutes the appropriate care is an area of intense debate.

Interplay between epilepsy and aging - The largest and fastest-growing segment of people with epilepsy are those age 60 and older. People with epilepsy face a number of related health challenges, including cognitive, physical and psychological disorders. But new research suggests other, less expected consequences on the aging process, providing insights that shed light on the long-term implications of life with epilepsy.

A highlight of the Annual Meeting was the Judith Hoyer Lecture, sponsored by the National Institute of Neurological Disorders and Stroke. Jacqueline French, M.D., spoke on “Obstacles in Epilepsy Diagnosis: If You Don’t Ask, They Won’t Tell.” The lecture is meant for both professionals and members of the public, to raise awareness of epilepsy and stimulate thinking about future advances.

THIS ARTICLE HAS BEEN GENEROUSLY PROVIDED TO US FROM THE AMERICAN EPILEPSY SOCIETY

7) SEIZED- INSIDE THE MYSTERY OF EPILEPSY SCREENING NIGHT REVIEWS

PLEASE CLICK HERE TO WATCH THE TRAILER

REVIEW #1 by: Alexandra Nicklas

On Tuesday, January 12th, 2016 the epilepsy community came together for the premiere of Seized: Inside the Mystery of Epilepsy at The Director’s Guild of America Theatre in New York City. Produced by the multiple Emmy and Peabody-winning filmmakers Betsey Arledge and Peter Schnall, this one-hour documentary was inspired by the vision of FACES board member, Amy Moritz. Seized is a powerful and emotional close-up on epilepsy that was created to raise awareness and decrease stigma. The daily struggles of four families are chronicled and a discussion of current research and treatments is provided.

I have epilepsy, but my epilepsy is mild and I am seizure free. However, most people have debilitating forms of epilepsy. These severe forms can overpower an individual and their family’s life, making them live on the edge and significantly reduce their quality of life. One young adult in the documentary has been living with epilepsy since she was eighteen months old. She has been unable to leave her house for most of her life and her parents have been watching over her 24/7. Desperate for a cure, she comes to see Dr. Devinsky at the NYU Langone Medical Center to partake in a clinical trial he is conducting on using a marijuana-derived drug – CBD - to reduce seizures. With the drug, she soon learns that her seizures decrease and she is able to leave the house to do some of her favorite activities: swimming and art. This short clip opened my eyes to the prevalence of the different epilepsy forms, the emotional stress of epilepsy and how quality of life can be hindered as a result. The documentary also portrays how epilepsy is known to be a mysterious disease with little knowledge on how it came about. A seizure occurs because the neurons in a person’s brain get overexcited which causes an electrical storm. Why? That’s the question that doctors and researches are trying to figure out. Dr. Devinsky describes that individuals and their families are looking for answers . Why them?…why epilepsy?… and how can epilepsy be cured? The more knowledge and awareness society has of epilepsy, the better we can understand, respond and care for affected individuals. Non-profit epilepsy organizations such as FACES provide an enormous amount of education, patient service and outreach to the epilepsy community. By producing documentaries on epilepsy such as Seized – which will premiere on PBS in the Spring of 2016 - the producers hope to continue to bring epilepsy out of the shadows of secrecy and stigma.

REVIEW #2 by: Frank Harrison

On January 12, I was fortunate to attend the FACES screening of “Seized, Inside the Mystery of Epilepsy.” The four stories told in this thought-provoking and emotionally engaging film will stay with me for a very long time. If you didn’t have a chance to watch this very special film, you will get another shot when it airs on PBS in the spring. How can I explain the stories told about four people who suffer from epilepsy without discussing the complete empathy that I felt for each of these cases? I have been an epileptic since the age of 16 and I’m used to it being part of my life. “Seized” powerfully presents both the trauma and the triumph of living with epilepsy and in each case I could identify with their journey.

By focusing on the different experiences of each of these people, “Seized” educates you on the quality of life and on the lifestyles that epileptic patients have to adapt to. Each of these situations provide the audience with an opportunity to learn more about the complex issues surrounding epilepsy and its different types.
I find them all to be heroes, although the one case that shook me to the core was that of a little girl who developed seizures at 6 months of age. She has not been able to enjoy a normal life since her experience with Lennox-Gastaut Syndrome has prevented successful use of treatment protocols, from medications to the frequently discussed CBD (cannabidiol oil, the non-psychoactive ingredient in marijuana) that is undergoing clinical trials at the NYU Langone Comprehensive Epilepsy Center.

I attended the screening with a good friend of mine, Joey, who has suffered from co-morbid epilepsy as a result of being hit by a van from behind when he was 10 years of age. The impact caused his body to slide across the street and hit his head against an iron pole of the elevated train tracks. He was in a coma for nine days and fractured his left arm and leg.

As a result of that trauma, Joey suffered what the doctor classified as Gran Mal seizures starting in his mid-twenties. Not even 400mg of Dilantin could control them. None of the battery of tests he was put through could pinpoint the seizures. Then, in his 30’s, the seizures stopped. So it’s not surprising that Joey identified with the individual in the movie who suffered head trauma from an explosion while on duty in Afghanistan. His experience with seizures, like my friend’s, is inherited by other traumas and doesn’t necessary clarify him as an epileptic patient.

Joey summed up his feelings right after the film by saying, “This documentary is simply amazing and I hope and pray more people will be compassionate about what a person with epilepsy and seizure disorder goes through each day. I always felt out of place and weird around my family and friends. Most people don’t comprehend the impact seizures have on your life.” This movie will hopefully go a long way towards changing the stigma and misunderstanding surrounding epilepsy.

Joey and I had the chance to speak with Caitlin, one of the girls in “Seized.” She has been successful at treating her seizures with CBD. She has also developed more creative outlets including singing, art classes and a little bit of comedy.

I am grateful to the film’s creators for doing such a tremendous job shining the spotlight on the real faces and varied experiences of epilepsy. And I’m grateful to FACES for making it possible for us to see the movie and understand that we are not alone and that there’s hope for us to be understood and to live a “normal” life.

Frank R. Harrison is a seasoned executive who has worked for corporations spanning the Financial Services, Entertainment and New Media industries. He’s a graduate of the NYU Stern School of Business, earned his MBA from Fordham University’s Graduate School of Business and returned to NYU to earn his Master of Arts degree in Psychology and his MS in Integrated Marketing. Connect with him on Twitter @frankhealthcare or at frh2001@stern.nyu.edu

8) FACES APARTMENTS 2015 STATISTICS

The FACES Apartments program is provided “cost-free” to families who travel from far away to receive epilepsy treatment at NYU Langone Medical Center. Year round, two standard rooms are available for occupancy at the Affinia Shelburne Hotel located on 37th Street and Lexington Avenue. This hotel is conveniently located within walking distance to NYULMC. Requests for accommodations are awarded on a first-come, first-serve basis. Priority is based on financial necessity and medical severity. Furthermore, only 1 room per family is granted. In case there is no availability, families will be referred to the NYU Hospitality Hotline at 212-263-2092, where families may be able to secure hotel accommodations at a discounted rate.

In 2015, FACES was able to serve:

  • 86 families total
  • Families came from 27 states and 4 different countries
  • Length of stay ranged from 1 day to 10 weeks
  • A total of 572 room nights were provided

If you would like to inquire about a FACES Apartment, please email facesapartments@nyumc.org. Your message will be returned within 48 hours.

9) 2015 COLLEGE SCHOLARSHIP RECIPIENTS IN REVIEW

MEET RUTH NIXON- MONTANA STATE UNIVERSITY

I have been blessed this Fall 2015 semester, and was able to complete all classes successfully while maintaining my goal GPA. I am very thankful to have been awarded $5,000 from the FACES College Scholarship Program! It was the highlight of my entire college experience. I felt very honored to be chosen, and it helped my education immensely. While school has been going well, I feel the main issue to share is epilepsy itself.

When I applied to the FACES College Scholarship Program last year, I had been seizure-free for almost four years. However, as unpredictable as epilepsy is, my four year streak was broken on September 8th of 2015. A week prior, I had recently gotten engaged and was also looking forward to the upcoming semester. The morning before my first exam, I had a tonic-clonic seizure. Thankfully, I wasn’t driving and I was with my sister at the time. I was frustrated and ultimately heartbroken.

My doctor put me on driving restrictions, and began to change the dosages of my medication. It was a very difficult 3 months dealing with the lack of independence. The side effects of changing medications and dosages left me feeling sick and constantly tired. I tried my best to remain stress-free, something that is much easier said than done.

As someone who developed epilepsy in my twenties, I feel that I have more of a responsibility to control as best I can with any possible triggering factors. The two elements that play the biggest part of my life are inadequate sleep and stress. I’ve always had trouble falling/staying asleep and with the added stressors school and work can bring, a lack of sleep is almost inevitable.

I urge others who have epilepsy, especially those who have been seizure-free for an extended period, do not take it for granted. I made this mistake and I want to warn others as well. Don’t get careless when it comes to your therapy, medication or routines! There are many factors that can provoke a seizure and as every person is different, it is your responsibility to learn about your potential seizure triggers. As of right now, I have a new medication regimen, and was able to get my drivers license back on December 14th. I am not ashamed to admit I wasted a lot of gasoline that day!

I hope to continue pursuing a degree in Community Health and am looking into becoming a speech pathologist. My goal is to help those who have trouble verbally communicating. I am currently learning American Sign Language, and hope to incorporate that into my field of speech therapy. Aside from school, I am excited to get married in June!

Ultimately, I know that I have epilepsy for a reason and while it is demoralizing at times, I believe that I can help and encourage others. Life is scary enough, but for those who have epilepsy, the fear of seizures can be crippling. If you have had a seizure, day to day life is never the same. I have been tempted to walk out of my classroom simply because I had that “feeling”. Even though a seizure didn’t happen, the fear still kept me captive. For me, that anxiety can be more debilitating than the seizure itself. I hope with all my heart that I can encourage others to not let fear control your daily life. I feel very thankful to be granted this opportunity to share a piece of my experiences.

I want to thank the FACES College Scholarship Program, and all who support it, in contributing so generously to my education. It means the world to me. Thank you!

MEET TAHNE SCHLESINGER- SUFFOLK COUNTY COMMUNITY COLLEGE

I would like to take this opportunity to thank the FACES College Scholarship Program for the award I received toward the 2015-2016 college semesters. I received a 3.7 GPA from Suffolk County Community College (Michael J. Grant Campus). During my first semester, I was asked to play volleyball for their women’s team. Because of the scholarship money FACES gave me, I was able to focus on school and volleyball instead of working to pay for my books and tuition. I remember going every year to FACES Game Day since I was a child. I have come so far since then and I have FACES to thank for part of my success.

Thank you again!

 

 

 

 

FACES is pleased to accept applications for the 2016 College Scholarship Program. FACES will provide financial support for the education of incoming freshmen or currently enrolled college or graduate students affected by epilepsy and seizure disorders. We are seeking to recognize the personal accomplishments of those living with epilepsy during their college journey. Awarded scholarship amounts will vary depending on the applicant’s financial need.

THE DEADLINE TO APPLY IS MAY 6, 2016

If you have any questions or would like for information about the program, please email FACESscholarship@nyumc.org.

10) FUDGERAISER

This past November marked the fifth year of our annual FUDGERAISER for FACES. The FUDGERAISER was once again headed up by Nick and Luke Berninger, along with their cousins, Max and Noelle D’Amato, and was run in honor of their brother, Eric, who suffers from epilepsy and is a patient of Dr. Devinsky. This year they were thrilled to add a new member to their team, Drew Pugliese, who participated in honor of his cousin, Joey, who also suffers from epilepsy. The team made packages and sold various flavors of fudge to friends, family and outside several supermarkets in northern New Jersey. All their hard work paid off with a donation of $3,200.00 being made to FACES from the FUDGERAISER! Throughout the years, the FUDGERAISER has donated a total over $13,000.00 to FACES.

ENJOY SOME PHOTOS!

11) LIVING WITH EPILEPSY

By: Lauren Thorpe

I never thought I would end up going through roughly a dozen serious medications and eventually agreeing to brain surgery when someone first told me I just had a seizure. It all began when a former coworker of mine witnessed an extended seizure I must have had mid-conversation and was able to tell me about it. It helped that he had seen seizures before and knew what was going on. Apparently I was having them then for a while when living out west and skiing regularly. My friends out there still claim, and I believe them whole-heartedly, that they told me right after I would have one. They did not know that I was totally out of it for a few minutes- what they call a postictal state- and therefore have yet to recall these warnings. But I do remember a distinctive stare of sheer fear in their eyes when interacting with me after one must have occurred.

Once aware of this new ‘physical issue’, I approached this task of figuring out my ‘problem’ as I have when running campaigns in the past (my whole life since college involved working in the non-profit world). The goal was clear, stop my seizures. But the strategy was a struggle. First, I had to leave my contract gig in DC at a job that I adored. Then, head back to the West and pack up my life and move home to my small town in New York to live with my folks and figure it out. I needed some doctors, real health coverage and an on-call chauffer (my license was taken away after I had a seizure while driving.) I gave myself a 3 month timeline, assuming there was a quick fix. Now, 3 years later, I am finally able to leave my childhood bedroom and attempt living on my own again.

Telling my whole story would take a while and I have lost all sense of brevity. I can get into the types of seizures I had, how often they were and different locations I was at the time. I can go on for hours about the various meds and unique side effects they came with, some I was warned about, and others impossible to articulate.

But I’ve come to learn that my story is not an anomaly. The entire time I was going through my struggle, I thought I must have been the only person experiencing it. There could not have been anyone out there that could relate to trippy lights and the changes in surroundings you see right before you have a seizure. An aura they call it. I’d call it a form of hallucinating. Turns out, I’m not the only one. Most people who have had a seizure are unaware that someone else nearby is going through the same thing. For the majority of my time since I learned about my epilepsy, I intentionally tried to keep it on the down-low. The motivation was that I would get over it eventually and did not want my good friends, former co-workers and or my extended social media community to hold evidence of my former “incapability”. Yes that is selfish; but I did not know any better. I was perpetuating the problem of being overwhelming discreet.

However now I am publicly announcing “I have epilepsy”. I’m not looking for condolences or even credit. I’m just putting it out there in hope that others will hop on the train. Since opening up, I’ve been learning more and more, such as the stats that roughly 1 out of every 26 people has had a seizure. This means NYC is home to over 70,000 epileptic people just in my generation (I’m technically a millennial). In the short span of time since moving to this city and starting to talk openly about my ‘problem’, I’ve met a handful of others through friends of friends. Some of them have been having seizures for over two decades and some are just starting to make moves to treat seizures that have been newly introduced into their lives. I am excited to find people I can relate with and am now motivated to bring an outlet to others.

This article is the first of many to come. Get in touch, reach out and let me know what you want to hear about or questions you may have. Questions related to specific drugs or treatments should be directed to your doctor. If you want to just talk about what life is like with the lingering knowledge that a seizure could happen anytime, I’m happy to listen. Knowing that I am not alone in this challenge has been life changing and I hope that, if anything, others dealing with the ups and downs of life with seizures, know this as well.

Lauren Thorpe will be a monthly contributor to our newsletter. She is interested in hearing from the community and would be happy facesinfo@nyumc.org to answer any non-medical related questions that you may have. Email with your questions or suggestions.

12) NOTEWORTHY NEWS

Top 10 National Press Articles

1) Experts Aim to Stop Epilepsy-Related Mortality

2) Music Therapy Shows Promise in Treating Depression, Speech Impediments

3) Unexpected Deaths: Researchers Explain Why Epilepsy May Account for More Lost Years of Life Than Other Brain Disorders

4) Doctors Sound Alarm Over How Cause of Epilepsy Deaths Are Reported

5) Top 10 Rare Disease Interviews of 2015

6) Touching Moment at ‘Miss Universe’ After Seizure Leaves Contestant Partially Paralyzed

7) Could Cannabis Treat Your Child's Epilepsy? Marijuana Oil 'Significantly Reduces Seizures in 50% of Young Sufferers'

8) Epilepsy Didn’t Stop Me From Becoming A Philadelphia Eagles Cheerleader

9) Cannabidiol for Intractable Epilepsy: Results from the Latest Open-Label Trial

10) Can Cannabis Treat Epileptic Seizures?

The VA Epilepsy Centers of Excellence (ECoE) video series “Veterans and Epilepsy: Basic Training” addresses the stigma of epilepsy and educates Veterans, their caregivers, and the general public about living with epilepsy. Each video in the series features a Veteran sharing his or her personal experiences and unique challenges balancing the medical, personal and social aspects associated with having recurring seizures. The goal of the video series is to promote public awareness of the impact of epilepsy in the lives of Veterans and to convey that these patients are able to live full, productive, successful lives. The first video of the series focusing on the diagnosis of epilepsy is now available on YouTube.

COMSEWOGUE STUDENTS GET THE CONVERSATION STARTED ABOUT EPILEPSY!

Comsewogue School District students recognized the importance of epilepsy awareness and seizure first aid for the fourth year in a row. This year we included more anatomy about the brain and stressed how the brain is the primary control center of the body. We presented a brain hat that mapped out the brain and had a brief description of each lobe function. It gave students and parents a better understanding of why we have multiple seizure types and long term effects of seizures. We wanted students to understand that if the frontal lobe is damaged by seizures it will affect speech. Memory and processing are an issue when a patient has seizures in the temporal lobe.

The night was a success! We raised $44 for NYU FACES fund "It's Time to Educate". Student helpers handed out epilepsy facts to district families and we made an epilepsy awareness ribbon together. Please see the attached photo of dedicated students and completed ribbon.

 

 

With the help of our fantastic FACES community, the 2015 FACES Gala Auction included 375 exclusive packages and helped the Gala raise over $4.9 million to support our mission and programs. FACES is now accepting donations for the 2016 Gala, being held at Pier Sixty at Chelsea Piers on Monday, March 7, 2016. Help us make this year’s auction bigger and better! Our auction is one of the largest in New York, and includes items such as designer bags, sporting events, high-end electronics, vacation packages, fine jewelry and much more.

If you are interested in donating items to the 2016 Gala Auction, please contact Marisa Maltese at marisa.maltese@nyumc.org