There are several myths and misconceptions associated with epilepsy. The Epilepsy Foundation (formerly called the Epilepsy Foundation of America), established in 1968, has been instrumental in combating these stereotypes. The Foundation’s Web site (http://www.epilepsyfoundation.org) is a very powerful resource in furthering its mission: to provide epilepsy awareness, defend the rights of people with epilepsy, provide services to aid people with epilepsy, and support medical research efforts.
The layout of the Web page is simple, attractive, and easy‐to‐read. It includes information relating to advocacy, programs and services, news and publications, research, and education. In addition, it has a special section dedicated to children with epilepsy. I encountered few dead ends. However, one drawback of this site is its limited keyword searching capabilities. On one hand, it is not tailored to specialized terms and, on the other, for broader topics, it is difficult to limit search results. Nevertheless, the wealth of information one can gain from this Web site is enormous. It is useful to researchers in medicine and the law as well as any layperson who wants to learn more about the disability.
The Information and Education link (http://www.epilepsyfoundation.org/education) is a good place to start for one who knows very little about epilepsy. It provides an explanation of the different kinds of seizures, as well as epilepsy‐related statistics. In addition, it leads to several useful Web sites under the following categories:
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1Directory of Epilepsy‐related Websites;
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2Other Epilepsy Foundation Links Page;
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3National Epilepsy Centers, Programs, and Organizations;
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4International Epilepsy Centers, Programs, and Organizations;
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5Epilepsy Related Resource Pages; and
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6Selected Neurology/Neurosurgery/Neuroscience/Medicine Links.
The online version of the Foundation’s newsletter, EpilepsyUSA, retains the most essential elements of the print version. This includes major news items, such as the recently launched White House Epilepsy Initiative, headed by First Lady Hillary Clinton. In addition, reviews of books about epilepsy and epilepsy‐related experiences are located here. Most of the information that is not included in EpilepsyUSA online can be found in other areas of the Foundation’s web site. For example, under Advocacy, the link entitled “On the Docket” keeps a record of pending legal cases relating to epilepsy issues, dealing with discrimination not only regarding employment but also general public policy issues.
The Advocacy link (http://www.epilepsyfoundation.org/advocacy/) provides information on the following:
legal rights & issues;
the Americans with Disabilities Act (ADA);
driver’s license regulations;
grassroots advocacy;
the Epilepsy Foundation’s public policy positions;
statements from lawmakers concerning epilepsy;
a record of briefs and legal arguments in epilepsy‐related cases (presently under construction); and
currently pending cases that involve epilepsy.
The amount of information on the ADA is amazingly comprehensive. Each issue is explained in depth in plain language. Everything from employment to government services are discussed. The Foundation’s public policy statements include the 1999 Government Affairs Statement, Principles of Consumer Protection, and the Statement on Genetic Testing.
The Women’s Epilepsy Initiative (http://www.epilepsyfoundation.org/education/wei/), funded by Glaxo Wellcome, provides, among other things, relevant literature regarding women and epilepsy, the text of all the articles that have been published in EpilepsyUSA about women’s health issues, personal accounts of women with epilepsy, and other women’s health resources.
In addition to finding technical information, I came across some sites that focused on the creativity of people with epilepsy. The Massachusetts General Hospital (MGH) has set up a forum for people with neurological disorders in which they can express themselves through poetry (http://neuro‐www2.mgh.harvard.edu/MIND/Poetry/submit.html). The poems posted on this site reveal the diversity of experiences of people with epilepsy. Another such Web site is the Seizure Art web site (http://members.tripod.com/∼seizure_art/). Whereas the Massachusetts web site deals only with poetry, the Seizure Art site includes poetry, prose, and even visual art. These two Web sites differ greatly in presentation. The MGH site is almost devoid of graphics, while the Seizure Art site is full of them. Surprisingly, the number of graphics does not impede navigation. However, the Seizure Art Web page is more difficult to read since the background is black.
Another interesting Web site is “Brainstorms: all about epilepsy” (www.geocites. com/HotSprings/Villa/3228) created by a teenager from British Columbia. As one might guess, this Web page is geared toward a younger population. It includes general information about epilepsy, explanations of diagnostic tests, and personal accounts of epilepsy patients. The presentation of the information is user friendly to teenagers and children. For example, the EEGs (electroencephalograms) and CAT Scans (computerized axial tomography) are described, eliminating any existing fears about them. The perspectives of children that are documented here also provide comfort to others by letting them know that they are not alone. As with the Seizure Art site, the black background is the only problem I found.
This Epilepsy Foundation Web site is an excellent place to start to learn about epilepsy and the issues surrounding it. The content, format, and navigability are all good. I also liked the fact that one can find information on regional epilepsy foundations and link to the ones that have Web sites. Besides the search capabilities, the only other thing that bothers me is the name change from Epilepsy Foundation of America to Epilepsy Foundation. The former name is more precise. However, that aside, the site is definitely one to keep bookmarked if you need any information on epilepsy. Highly recommended.
