Unless otherwise noted, the books listed may be ordered through your local bookstore or through the Epilepsy Foundation National Catalog Sales Department (1-800-213-5821 or www.epilepsyfoundation.org )
General Information About Epilepsy
A Guide to Understanding and Living with Epilepsy, Orrin Devinsky, MD, F.A. Davis Co., Philadelphia, 1994.
- This easy-to-understand resource book covers a basic understanding of epilepsy and a wide range of medical, social and legal issues.
Living Well with Epilepsy, 2nd Edition, Robert J. Gummit, MD, Demos Publications, New York, 1997.
- This book encourages people with epilepsy to take a more proactive approach in managing their lives. Includes chapter by leading epilepsy experts.
Epilepsy and the Family: New Guide, Richard Lechtenberg, Harvard University Press, 1999.
- A useful resource of answers to questions that people with epilepsy and their families might not think to ask their doctors, including the physical and psychological effects, and the effect on the family.
Parenting and You: A Guide for Parents with Seizure Disorders, Epilepsy Foundation, Landover, Md. (available through the Epilepsy Foundation Catalog).
- This guide addresses the special challenges when a parent has a seizure disorder.
For Families of Children with Epilepsy
Seizures and Epilepsy in Childhood: A Guide for Parents, 2nd Edition, John M. Freeman, MD, Eileen P.G. Vining, MD and Diana J. Pillas, The John Hopkins University Press, Baltimore, Md., 1997.
- Written for parents who want to understand as much as possible about the causes, mechanism, social aspects and treatment of epilepsy.
Your Child and Epilepsy: A Guide to Living Well, Robert J. Gummit, MD, Demos Vermande, New York, 1995.
- Gives answers to many questions parents have and promotes a positive, encouraging approach to issues that affect children with epilepsy.
Children with Epilepsy: A Parents Guide, Helen Reisner, editor, Woodbine House, 1988. (This book is out of print, but may be available at your public library).
- Edited by a mother of a child with epilepsy, this book familiarizes parents and teachers with therapy, coping skills and some of the special issues that arise when a child has severe seizures.
The New Language of Toys, Sue Schwartz, PhD and Joan E. Heller-Miller, Ed.M, Woodbine House, Kensington, Md., 1996.
- This book explains how to use everyday toys and books to create experiences that stimulate children with special needs and develop their language skills.
Issues & Answers: A Guide for Parents of Children with Seizures: Birth to Age Six
Issues & Answers: A Guide for Parents of Children with Seizures: Ages Six to Twelve
Issues & Answers: A Guide for Parents of Teens and Young Adults with Epilepsy
Issues & Answers: Exploring Your Possibilities, A Guide for Teens and Young Adults
Epilepsy Foundation, Landover, Md. (available through the Epilepsy Foundation Catalog).
- These comprehensive guides provide general information about epilepsy and managing the child’s seizure disorder as well as addressing specific issues relevant to the child’s age.
Brothers and Sisters: A Guide for Families of Children with Epilepsy, Epilepsy Foundation, Landover, Md. (available through the Epilepsy Foundation Catalog).
- This guide looks at the effect epilepsy has on the other children in the family. It has two sections: the first half is written specifically for siblings to read; the second half is for parents and other adult family members.
My Friend Emily, Susanne M. Swanson, Writers Press Service, Boise, Idaho, 1994. (Ages 5-9).
- Emily, a self-confident child who enjoys life, shows that kids with epilepsy are just like other kids.
Lee the Rabbit with Epilepsy, Deborah M. Moss, Woodbine House, Kensington, Md., 1989. (Ages 3-6)
- A delightful story about a young rabbit coming to terms with epilepsy (absence seizures).
Dotty the Dalmatian Has Epilepsy, from the Dr. Wellbook Collection, Tim Peter & Co. 1996. (Ages 2-6)
- Charming story in which Dotty discovers she has epilepsy. At first she feels embarrassed and afraid, but she learns to accept and control her seizures and goes back to her important job of helping the firefighter to save lives.
Views from Our Shoes, Don Meyer, Woodbine House, 1997.
- This book speaks to siblings with a brother or sister with special needs. It lets them know they are not alone, that other children have had similar experiences and successfully met their challenges.
Books about Personal Experiences
Embrace the Dawn, Andrea Davidson, Sylvan Creek Press, McCall, Idaho, 1989.
- A moving biographical account of one person’s life-long experience with epilepsy and what led her to her to decision to have surgery which stopped the seizures.
Past Forgetting, Jill Robinson, Harper Collins, 1999.
- An autobiography by the daughter of a Hollywood producer, this book takes the reader on a memorable journey into the world of lost memory and the writer’s determination to recreate her life.
Miles to Go Before I Sleep: My Grateful Journey Back from the hijacking of Egypt Air Flight 648, Jackie Pflug with Peter J. Kizilos, Hazleden, 1996.
- Tells the story of a hijacking during which the author suffered a severe brain injury that, among other things, affected her vision, her memory and left her with epilepsy. Her journey to recovery and eventual success as an inspirational speaker gives hope to all those fighting the physical effects of brain injury.
Saving Jesse, Nicky Armstrong with Jeanne Heal, Tendre Books, 1996.
- This is the story of one family’s search for answers to Rasmussen’s Syndrome, a rare and devastating type of epilepsy. It shows how a child’s best advocates are the people who love and care for them and that quality of life is not just freedom from illness.
Takedown, E.M.J. Benjamin, Epilepsy Foundation (available through the Epilepsy Foundation Catalog.)
- This is a realistic portrait of a high school wrestler adjusting to the diagnosis of epilepsy. His story is about winning at life, not just about winning at sports.
Epilepsy-I Can Live with That! Writings by People with Epilepsy, Sue Goss, editor, Epilepsy Foundation of Victoria, Australia, 1995.
- The experience of epilepsy as recorded by a group of ordinary men and women in Australia. Each story focuses on growth and triumph over personal challenges and emphasizes individual courage and hope.
The Brainstorm Series, Steve Schacter, MD, Lippincott Williams & Wilkins, New York
Brainstorms: Epilepsy in Our Words , 1993.
- Patients describe their experiences with seizures
The Brainstorms Companion: Epilepsy in Our View, 1994.
- Family members, friends and coworkers of people with epilepsy describe their observations & feelings.
The Brainstorms Family: Epilepsy on Our Terms, 1996.
- Reveals the terror, uncertainty and frustration felt by children and parents after an initial seizure and documents the ongoing trials, tribulations and triumphs.
The Brainstorms Healer: Epilepsy and Our Experiences, 1996.
- Reveals the wide range of emotions experienced by those who work with epilepsy patients and their families.
The Brainstorms Woman: Epilepsy in Our Lives, 2000. The stories of women living with epilepsy as told in their own words.
The Epilepsy Foundation has a number of videos available through their Catalog Sales Department (1-800-213-5821 to request a catalog or place an order.)
Local affiliates of the Epilepsy Foundation, including EFSDC, have informational literature available on several epilepsy topics. Some videos may also be available on loan to residents of the affiliate’s local area.