Making a Documentary that Makes a Difference for People Living with Epilepsy
The Epilepsy Therapy Project (Epilepsy Therapy Project) has participated in making a 30-minute documentary about the problem of medically refractory seizures, which will begin airing on local PBS stations across the country in mid-November. Co-hosted by Drs. Steven Schachter and Eric Kossoff, the film is a part of the Healthy Body, Healthy Mind, PBS television series. According to Warren Lammert, Co-founder and Chairman of Epilepsy Therapy Project, “It is our hope that this film will help viewers appreciate that 30 percent of those with epilepsy have no therapeutic option to control their seizures. Even though epilepsy is the most common serious neurological disorder in the world today, there still are people unwilling to talk about it.”
Personal interviews and commentaries about living with epilepsy convey the film’s message about the pressing need for new treatments. Additionally, currently available treatment options that include medications, vagus nerve stimulation, and the ketogenic diet are highlighted. Through the interviews it becomes clear that people with epilepsy face difficulties and challenges that are compounded when others misunderstand their disorder.
Highlights of the Documentary
Chanda Gunn, Epilepsy Therapy Project spokesperson (http://www.epilepsy.com/epilepsy/Chanda_Gunn.html), says that she has lived with epilepsy since she was about 9 years old. But she added, “People with epilepsy have every bit of the same kind of potential that I have. With the right medication to control it, they can accomplish their dreams as I have accomplished mine. My brothers taught me how to play hockey, because hockey was safe – I wore a helmet and padding to protect me if I had a seizure on the ice. I went on to play in the Olympics and was awarded a Bronze medal.”
Chanda wears a helmet on the ice. But little Matthew Robinson, now five years old, had to wear helmets around the house and while playing with his brothers and sisters. He used to have as many as 80 seizures a day, and his family adapted to a lifestyle that kept him safe. For Matthew, medication was nearly fatal. Fortunately, the ketogenic diet has been life-saving for him.
Kathy and Warren Lammert’s daughter Sylvie, like many other children with epilepsy, suffers from uncontrolled seizures despite all available therapies. Sylvie is a 9-year-old girl with a family that has devoted themselves to her care. They have given Sylvie the confidence to go to school, play happily with her siblings, and talk about her epilepsy with classmates. Despite the challenges of multiple seizures every day since infancy, a certain peace and beauty radiates through Sylvie and throughout her family.
Vivacious Heidi Braunlich talks in the film about misunderstandings on the job and difficulty finding work. But even more disconcerting for her have been the number of times when her seizures were misinterpreted as a “drug induced” trance. More often than not, EMTs would be called. She would be restrained, unnecessarily, and taken to a hospital. Today she wears dog tags that explain what one should do when she has a seizure in public.
Because of his seizures, Joe Russo has not been able to live out his dream of finding a social life or a job, though he feels capable of doing so. “I feel that at the present time, we’re still like being in a jail cell. We’re enclosed. Those doors need to be opened and we need to see the light at the end of the tunnel.”
The Reality of Unmet Needs
The documentary provides medically accurate information about epilepsy and highlights the urgent need for new effective treatments. Dr. Orrin Devinsky, co-founder of Epilepsy Therapy Project, and an epilepsy expert featured in the documentary added, “We are trying to educate, to set up study groups, to provide grants, and do whatever what we can to rapidly advance new therapies by shortening the time it takes to bring a new idea from the development process to the patient.”
Dr. Schachter, Editor-in-Chief of Epilepsy.com, says, “More research and greater public awareness are the keys to ensuring that everyone with epilepsy can pursue their life ambitions. Watching the reality of the unmet need in this documentary makes our mission all the more vital.”