Alarming Facts and What We're Doing About Them

Articles in recent medical journals have pointed out two alarming facts:

1. Many epilepsy patients are poorly informed about their disorder.
2. Many health-oriented websites offer incomplete information, and most are written at a high reading level.

Many other fine websites provide helpful information to epilepsy patients and their families. Epilepsy.com has links to some of them and we encourage you to explore what they offer, in addition to what you'll find here. If everyone did that, alarming fact #1 would be eliminated.

Alarming fact #2 is where we believe you will find Epilepsy.com to be different from most of the other sites. As we say in the statement of Our Mission, we are trying to offer in-depth information and real-world experience. Our goal (although we're not there yet) is to make the full scope of epilepsy information accessible to people who are not doctors or nurses—and not just the dry facts but also the personal experiences of both epilepsy patients and the health professionals who care for them.

We offer information at different levels so that just about everyone will find articles they can understand and use. Then, as your knowledge increases, you may want to explore our more advanced levels of information. Even in those pages, however, we are trying to minimize the amount of specialized medical and scientific language that we use. For those who want all the details and are willing to learn the terminology, we provide links to the most important original research articles and similar sources of information.

The most obvious example of our efforts to make this site more readable is our use of brand names for most seizure medicines. Experience has shown that both patients and doctors overwhelmingly use brand names when talking about medicines. This is even more true for epilepsy, since generic versions of many seizure medicines are either unavailable or may not be recommended for the best seizure control. By emphasizing the name that you recognize, we believe we are improving readability by eliminating one "translation" step in your mind. Many other information sources—including many other websites—use mostly generic names for medicines, but we have put ourselves in your place and used the names you know whenever we could.

Our goals are ambitious and undoubtedly it will take us years to even come close to fulfilling all of them. But in the meantime, we hope that you will find something here that will help you to better understand epilepsy, to communicate with your doctor, and to get the most out of life.

References

1 Long L, Reeves AL, Moore JL, Roach J, Pickering CT. An assessment of epilepsy patients' knowledge of their disorder. Epilepsia. 2000 Jun;41(6):727-31. [PMID: 10840406]

2 Berland GK, Elliott MN, Morales LS, et al. Health information on the Internet: accessibility, quality, and readability in English and Spanish. JAMA. 2001 May 23-30;285(20):2612-21. [PMID: 11368735]