Who knows the most about epilepsy? Clue—it isn’t the doctors. Doctors know technical material, for example, which drug to try in a particular circumstance, what tests to order and how to interpret them. But, with rare exceptions, doctors do not have seizures, do not suffer the side effects of seizure medicines and do not experience the societal and life limitations resulting from epilepsy. In clinic, I often hear “Doc, I’m no expert on epilepsy, but . . .” What follows is usually highly relevant information, because that person is in fact an expert on epilepsy in their child, their spouse or themselves.

Years of living with epilepsy generates insights into and strategies for how to cope with the disorder. Some of these insights are so specific that they apply only to one person. Others are of much broader utility. How can a person with epilepsy learn from the experience of others? Epilepsy support and discussion groups are one way, which works where there are such groups within practical travel distance. These days, people with medical conditions share experiences and thoughts via the Internet. On countless forums and blogs, nuggets of useful information are mined from mountains of digital detritus. Information in the blogosphere is limited; incomplete, often difficult to read, and sometimes just plain wrong.

This month, epilepsy.com confronts this information gap with something new: a journal written and governed by people who have been touched by epilepsy. The goal is both a sharing of practical wisdom, and a building of a sense of community. Material is checked for medical accuracy, but the words are those of people with epilepsy, their families or loved ones, edited for clarity. Medical Editor’s comments are supplementary and separate from the author’s material. The journal does not look to document individual medical histories, because those are in fact individual. Each article is selected for publication because it provides practical information to help deal with the problems produced by epilepsy. For that reason, the journal is called “Epilepsy: Insights & Strategies.” Its editorial board, whose responsibility it is to determine the content of the journal, is comprised of people who live in some way with epilepsy. Authors and editorial board members are not medical professionals, unless they also personally experience epilepsy.

The inaugural issue has articles on how to travel when you have epilepsy, the experience of video-EEG monitoring, how to make a decision about having epilepsy surgery, empowerment thoughts from a parent, meaning of the recent changes in the Americans with Disabilities Act, strategies for coping with seizures, and how to have more productive epilepsy clinic visits. To help to establish a discussion, each article is followed by a button to add and publish your own thoughts and comments on the subject of the article. The journal ends with a list of thirty-two suggested topics for future articles, but these are only examples, many other topics will be considered for publication. Authors do not need to have writing experience; our journal staff can use a process of interviews and editing to produce a publishable document. However, only some of the suggested ideas for articles will be developed into a publication, so make preliminary inquiries before devoting significant time or effort. The key for acceptance is having useful insights and strategies for how to deal with epilepsy in a way that will speak to a significant number of people.

The National Library of Medicine lists 35,349 medical journals. None of them are like this new journal. Please look it over. Consider commenting on an article that catches your interest or contributing one yourself, by contacting robin@epilepsytherapyproject.com. In every meaningful sense, this is your journal.