Foreword: The Editorial in this issue has been written by Janice Buelow, a member of JNN's Editorial Board. She underscores the issues and concerns related to epilepsy, the patients it affects, and our efforts to care for these individuals.
V. Susan Carroll, MS RN CNE
Editor-in-Chief
November is Epilepsy Awareness Month. In the United States alone, more than 1 million people have epilepsy, with the highest number of new cases occurring in the very young and the elderly. Epilepsy is not a single disease. It is a set of different syndromes with the occurrence of seizures as the common thread, but each person with the diagnosis is unique. While the general public pictures a seizure as a generalized tonic clonic event, there are many different seizures types, some associated with altered consciousness and some not. Witnessing a seizure can be frightening to the observer. It has the potential to change how we feel about the person having seizures, and negative feelings caused this way are often the root of the stigma suffered by many people with epilepsy. People who have epilepsy also must manage the effect of seizures and medications on their everyday life.
Having worked as a nurse with people with epilepsy for more than 2 decades, I have witnessed courage and determination in the face of adversity from some of them. One patient who could not drive took three buses every day so that she could maintain her job as a teacher. She did her job, and in the process she taught her students about epilepsy. I recall an adolescent who was diagnosed with epilepsy as a teenager. His seizures were very hard to control, but instead of shrinking from life because of his challenges, he embraced life. He went to college and traveled around the world, studying the effect of national health services on patient care. He is now a successful young businessman.
Parents of children with epilepsy face daily challenges that most of us never think about. It is a 24-hours-a-day, 7-days-a-week, 365-days-a-year, and sometimes life-long task, but they manage their child's disorder out of love. Some of these parents, encouraged by nurses and doctors, become active in their communities and in service organizations, serving as advocates for their own and others' children with epilepsy.
Success stories are wonderful to relate, but as every practitioner knows, some patients do not adapt well to their illness,. For example, some complain of being unable to work and of feeling isolated. Moreover, a little-discussed problem is sudden unexplained death in epilepsy (SUDEP). The tragedy of losing a loved one in this manner is devastating, yet discussion of SUDEP is rarely included in patient education.
As nurses, we know our task is to help people reach their highest level of wellness despite their medical diagnosis. Nursing must be based on evidence supporting such work as the best way to deliver patient education and methods to help patients develop sound self-management behaviors. As nurses we are the professionals who can best help our patients meet their challenges, and this can be done through direct care, patient education, and research. Part of our work is to be involved in research to uncover evidence that we can use to establish best practice. Research informs practice and in that way research-practice partnerships represent the best care for our patients.