Epigraph Vol. 18 Issue 2, Fall 2016

From the Information Officer

The International Epilepsy Agenda Moves Forward

Ed Bertram

One of the goals of Epigraph is to publicize how our colleagues are improving the lives of people with epilepsy with quiet but important steps forward. These steps are key to chipping away at the many barriers to care and to social acceptance. In this issue of Epigraph there are stories about efforts in education and system reform by patients and by our professional colleagues.

Epilepsy Awareness Day in Disneyland was established in 2013 to allow patients to present their perspectives about their challenges and how they have overcome them. These gatherings allow patients and families to overcome their sense of isolation as they learn there are others who share their experiences. The next Epilepsy Awareness Day is November 2nd and 3rd in Anaheim, California. Another patient-based effort is the Brain Recovery Project that is focused on patients who have undergone a hemispherectomy, to help families understand the challenges in recovery and how to meet them. It is year-round effort and resource with an annual meeting for patients and specialized therapists to find paths forward to the best possible quality of life.

One of the great problems faced by all people with epilepsy is the fragmented care that exists in most health care systems. Carter Snead reports on the new integrated system and plan of care in Ontario for people with epilepsy. This article provides a good introduction to how the system was organized. The many guidelines that the Ontario health care system developed over the last several years on the way to this integrated system have been placed on our website. It is a good example of how vision and persistence can move epilepsy care forward.

Lack of knowledge about epilepsy is common to almost all countries, and courses specifically for primary care physicians have been under development for many years. Our Latin American colleagues have developed two approaches. One is the new online instructor-led program for primary care physicians in which the participants learn the basic principles of diagnosis and treatment from epileptologists throughout the region. The second is a more traditional course held at national primary care conferences. The high participation has emphasized the desire of primary care professionals to treat epilepsy better.

EpilepsyDiagnosis.org was created several years ago to provide accurate information, including video examples of seizure types, and it has developed a significant following. Kate Riney summarizes its current state and where it is going in the near future. It has become an outstanding resource for quick information as well as for teaching, and more should make use of this resource.

Our chapters and their members are leading the efforts to improve access to knowledgeable epilepsy care. In this issue, we celebrate the 20th anniversary of the Epilepsy Society of Thailand. During its first 20 years, the EST has almost doubled in size and has worked to create practical clinical practice guidelines, a quick reference handbook and an EEG textbook in Thai. Like the rest of the epilepsy community, our Thai colleagues face enormous challenges in improving access to epilepsy care, but a milestone anniversary such as this allows us to take stock of how far one can go in a short 20 years.

We hope you find these articles useful and, in some cases, inspirational about what can be done. If you have a story to share about the challenges and successes in moving the efforts to minimize the effects of epilepsy on people, please let us know (info@ilae.org).

Ed Bertram, Information Officer