I was shocked to hear that 1 in 26 people in the U.S. will develop epilepsy. This was a staggering stat for me to hear. The Institute of Medicine recently stated that a serious lack of public awareness about epilepsy encourages misperceptions and misinformation about the disease. When I heard that, I was anxious to hear more and see what I could do to spread the word.

There are 3 key players in a brand-new epilepsy awareness initiative that are looking to help change the lack of awareness about Epilepsy. They introduced me to “Medikidz Explain Epilepsy,” a first-of-its-kind comic book in the U.S. designed to educate children living with epilepsy about the disease and how to talk about it with their peers. The fictional story is based on the experiences of a 14-year-old boy named Jack, who is living with epilepsy.

I had the opportunity to chat and interview these amazing 3 key players…

· Jack, who can discuss how he manages living with epilepsy while navigating middle school

· John R. Mytinger, MD, Assistant Professor of Pediatrics and Neurology, Ohio State University, Nationwide Children’s Hospital, and a peer reviewer of the book, who can speak to the stigma surrounding epilepsy as well as the need for educational resources to explain complex medical concepts to children

· Laurie Ostroff-Landau, Director, Public Relations, Eisai Inc.

1) Jack – How have you managed to live with epilepsy? Is it something you think about every single day?

Dealing with epilepsy has been a really different experience for me. It’s been very hard taking different medications and finding the right one. It eventually got easier for me though. Throughout the year I’ve been using different medications and right now I’m still having seizures but I’m doing better in school and outside of class.

Good day or bad day, I don’t normally think about epilepsy. I only think of it if I need to talk to someone about my condition.

2) What kind of impact are you hoping this comic book will have?

Jack: I hope it will teach kids and grownups what goes on inside the brain during a seizure and how to handle it. I hope it will give a better idea of what epilepsy is and help everybody understand what causes seizures.

Dr. Mytinger: Historically, epilepsy has been misunderstood, despite the fact that it’s a common disorder. In fact, it’s the fourth most common neurological condition in the U.S., affecting more than 2.2 million Americans. What we need are age-appropriate educational resources that address the misconceptions and stigma associated with epilepsy. Eisai Inc., a pharmaceutical company, teamed up with Medikidz, a company that makes comic books designed to help young people understand illness and medical concepts, to create a vivid and scientifically accurate comic book to address these issues and explain the condition to children. I’m excited to use the comic book to teach my patients about epilepsy.

3) Dr. Mytinger – what are some of the stigmas surrounding epilepsy?

Unfortunately, over the centuries, many misconceptions have evolved to contribute to a negative stigma surrounding the condition.  This may be in part related to the dramatic nature of some (but not all) seizures, the unpredictable nature of seizures and the feeling of helplessness it sometimes evokes in people who witness them.  In the past, many patients and their families were afraid to talk about epilepsy. Although this silence is breaking in many respects, a recent survey showed that more than one in three children with epilepsy keep their condition a secret because they don’t want to be treated differently, and nearly one in four parents also choose to not disclose the diagnosis in an effort to protect their child from stigma.
 
Many people do not realize that seizures present in many different ways. They can be subtle or severe, ranging from a brief stare to a convulsion. Approximately two-thirds of people with epilepsy become seizure free with medications alone, whereas others can improve with treatments such as epilepsy surgery, neurostimulation, or the ketogenic diet. In addition, many children can outgrow their epilepsy.

4) Laurie – How do you feel Jack’s personal story will help other children?

Jack’s story, as it is represented in the comic book, shows a boy who is able to live a happy and healthy life, despite his epilepsy. We at Eisai hope that this book can help empower children who have been diagnosed with epilepsy to both understand their condition and realize that with proper care, they need not be totally limited by it. By presenting this information to children living with epilepsy in a way they can grasp, the comic book is equipping them with the knowledge to explain their condition to others and help break down any negative reactions they may encounter.

5) Why are you all so passionate about sharing this information?

Laurie: Eisai recognized a gap in the resources available to educate children about epilepsy. The company chose to support “Medikidz Explain Epilepsy” in an effort to deliver engaging and easy-to-understand educational materials to children who are living with the condition so they can better understand and explain their disease. As a company, Eisai focuses on putting patients first—we call it human health care (hhc)—so we’re pleased to have the opportunity to support the development of tools to help epilepsy patients better understand their condition.

Jack: I think it’s really important to educate other people about epilepsy. The comic book is a fun and great way to explain to kids what epilepsy is and what happens in the brain when someone has a seizure. It’s helpful to my friends in school so they can know what to do and not be scared when I have a seizure.

Dr. Mytinger: One of the most important things I do as a child neurologist is helping children and their families understand epilepsy. I am excited to have this comic book to use as a platform for education and I am proud to be a part of its development.