Anyone looking for information on epilepsy will find the Web to be a great source of information. The country’s top epilepsy research and advocacy organizations and the Web’s top consumer health Web sites, as well as the federal government, make getting the facts you need a cinch. Use this Web guide to learn about the basics of epilepsy, how to cope with it, how to find a support community, and more.
Epilepsy is a condition in which a person experiences repeated seizures that are electrical ... read more »
Epilepsy’s main symptom is repeated seizures, but doctors use a variety of tests to diagnose ... read more »
Life with epilepsy can pose a number of challenges. Depending on the condition’s severity, ... read more »
Epilepsy is a relatively common disorder: more than 3 million people in America are affected by it and seizures, and the Epilepsy Foundation estimates that as many as 10 percent of American adults will have a seizure at some point in their lives. On the Web, there are many blogs and forums where people share their thoughts and emotions. Find almost any experience, from an adult with epilepsy to a parent caring for a child with it.
- On the Web, epilepsy is commonly written using the abbreviation “E.”
- Support sites, forums, message boards, and chat rooms can all be used as support outlets. Some support groups and boards are moderated, others are not. Moderated Web sites are usually run by volunteers who are familiar with the particular issue and can ensure that the board conversations don't go off track. Unmoderated boards can be very useful, but beware that there may be people with an agenda different from yours. Always use caution when chatting on the Web.
For forums …
Coping With Epilepsy
is a series of forums that require free registration to post messages: “The Loft
” is a place for teenagers, and “Riva’s Memorial
” is a forum for remembering those who have died from seizure-related disorders. There is also a blog
about a mother who was diagnosed with epilepsy at age 8.
The Epilepsy Foundation
has a “Teens & Epilepsy” forum. Look for threads about medication, exercise, college, making friends, and headaches.
For blogs …
E. is for Epilepsy
is written by a California woman who was diagnosed with epilepsy more than 50 years ago. She encourages epilepsy education to remove any stigma associated with the condition.
Epilepsy in a Nutshell
is written by a University of Toronto graduate student whose Ph.D. thesis is on the ketogenic diet. Read his posts for discussions of new medications, sudden unexplained death in epilepsy (SUDEP), and advocacy events.
The Diary of a New Mum with Epilepsy
is about a woman with epilepsy who lives in Great Britain with her husband and infant. Read about her experience with epilepsy during her pregnancy and motherhood.
For parents’ support …
is a listserv run by Parents Against Childhood Epilepsy, Inc. Listservs are email groups in which a person sends an email to one address, and it is distributed simultaneously to that list’s subscribers. Join the listserv for free and then browse the email archives, too.
To find local resources …
The Epilepsy Foundation
has a list of Epilepsy Foundation affiliates around the country. Look at the top left-side of the page, in the box that says “Community Connections.” Some states have only one affiliate, or none at all, and others have a few. The programs offered by the affiliates vary, but could include children’s camps, support groups, public education, and independent living opportunities.
Epilepsy is an extensively researched condition. On the National Institutes of Health’s ... read more »
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