Epilepsy.com has launched something new: a journal about epilepsy, written and reviewed by the people who live with epilepsy. There is no shortage of scholarly journals and books about epilepsy, but the vast majority of these are written by science and medical professionals who do not themselves have epilepsy or cope with epilepsy in their everyday lives. Technical jargon is the language of library journals and does not translate easily for most people outside the professional research fields, including even many practicing physicians. Such journals are necessary to document research advances and clinical wisdom, in order to build upon the discoveries of the past. But surely there also is value in communicating the wisdom and lessons learned by non-medical people who have epilepsy and those who care for them. You are the people who can best advise others how to cope with a new diagnosis of epilepsy, or discuss the process of weighing benefits versus risks of surgical procedures, how to deal with the education bureaucracy, where to draw the line on recreation safety for your child with epilepsy, how to choose among a variety of possible therapies, and countless other topics. These lessons comprise a highly beneficial knowledge base that need not be recreated and relearned by every person with epilepsy. The internet can and should be a tool for sharing these lessons learned.
Epilepsy.com introduced a journal, named by the users. It accepts spontaneous submissions of articles from people with epilepsy, their families, friends, advocates and caregivers. Medical professionals are eligible to contribute only if they also fall into one of those categories. Epilepsy.com maintains an updatable list of topics on which articles would be welcome, but the list does not exclude other unlisted good topics. Personal medical histories are not invited for the journal, but may fit well into the epilepsy.com forum or blog space. If you have insights or strategies to share that would help others with epilepsy, but little experience with writing, epilepsy.com can help you put the story into words, or create an interview format to tell the story (by email to email@example.com). Non-medical professionals, with experience either with epilepsy or with writing will form an editorial board to choose among selections for the journal. When we have enough articles available, we publish it online. It has the look of a printed journal, but it in fact is electronic and not circulated on paper. Articles are submitted as a public service and not for payment. Once an article is published, any reader will have the opportunity to contribute a published discussion thread linked to the article.
The concept of consumer-produced and consumer-reviewed journal is new, and takes epilepsy.com into uncharted territory. Its success depends upon the number and quality of contributions by you, the people who know the most about epilepsy.
As a member of the epilepsy.com community, you can participate in up to four ways:
Section Editor: Robert Fisher, M.D., Ph.D. and Robin Owen
Last reviewed: February 26, 2010
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