Resources
Centers for Information
Look online for the one in your area for questions, counseling and local support groups.
A great resource for online medical questions and information.
Another very informative online resource for immediate information.
Books
A Mind Unraveled. By Kurt Eichenwald
A New York Times best-selling author’s personal account of several decades dealing with
epilepsy.
Epilepsy 101: The New Patient and Family Guide to Living Well.
By Ruben Kuzniecky, MD
A great reference book, especially for those that have just been diagnosed.
Epileptic. By David B.
The author tells the story and history of his brother’s battle with epilepsy. A very moving sibling’s experience told in the text of comics. (This is not a book for children.)
Understanding Epilepsy. By Columbia Quigly and Shawn deLoache.
A comic book written for children using superheroes to explain epilepsy to a boy who has just started to have seizures.
Documentaries
Seized: Inside the Mystery of Epilepsy.
A PBS Documentary. Look for this documentary on your local PBS station or on You Tube. It tells the story of families dealing with epilepsy and how it affects their lives, as well as showing new types of treatments being used to control and/or stop seizures.
Zach, A Film About Epilepsy.
A documentary about a young man with a severe form of epilepsy. This film gives some insight into amount of care that is required when someone has severe brain damage from seizures, and the pressure and strain this can put on the whole family. This film can be seen on YouTube.
Movies and Short Films
(I must preface this section by saying that, in my opinion, there are few films whose theme is to truly and empathically portray the experiences of someone with epilepsy. Occasionally there will be a character with epilepsy in a film, like “Garden State,” for instance. The character tells us she has epilepsy and we hear a few facts about her life with the disease, but it is a very small part of the film. Thankfully, I have found and included a couple on this list that do a good job explaining or showing what having seizures is like.)
Under the Lights.
This is a short film written and directed by Miles Levin, who himself has epilepsy. The main character, Sam, has epilepsy and wants desperately to go to his school’s prom. He runs the risk of a seizure from the lights so he puts tape over his eyes. The film deals with the psychosocial issues of epilepsy and the need to find a way to fit in with others in the everyday events that others take for granted. This film can be seen on YouTube.
Electricity.
This 2014 movie is adapted from a novel by Ray Robinson. Lily is a woman dealing with epilepsy who is having seizures on a regular basis. When Lilly’s mother dies, she has to go on a journey to find her brother to tell him about their mother and give him
his part of their inheritance. The storyline deals with a number of common issues – injuries from falls during a seizure, the need for constant medication and their side effects, and how this relates to relationships with others. This movie can be rented on YouTube.
Websites and Projects
The Hidden Truths Project
Dr Julie Thompson-Dobkin started this project in 2011, providing art exhibits for individuals with epilepsy to show their work and talk about the disease itself. The Hidden Truths Project works to eradicate the discrimination and stigma that so often accompany this disease. (https://www.hiddentruthsproject.com/our-story/)
The Cameron Boyce Foundation
After the famous actor died in his sleep from SUDEP, his parents created a website to inform the public about the disease and to fund research
projects toward eventually eradicating epilepsy altogether. (https://www.thecameronboycefoundation.org/ )
