Epilepsy affects the lives of millions of people of all ages around the world. It is an unpredictable and potentially devastating group of diseases that can cause seizures, brain injury, and cognitive and psychiatric disabilities. It is an often misunderstood and stigmatized disorder, and as a result many patients may attempt to hide their condition. This has far-reaching implications in terms of diagnosis, patient management, epilepsy research, and public advocacy. The collaboration between the International League Against Epilepsy, the International Bureau for Epilepsy, and the World Health Organization can help ensure that epilepsy will continue to be at the forefront of diseases which are considered critically important by the WHO.
To improve the perception and treatment of epilepsy, the impact of epilepsy must be understood both at the level of the individual, whether that might be a person with epilepsy or a healthcare provider, and at the level of society, both nationally and internationally. In order to address epilepsy at the individual level, it is important to understand the perspective of the person with epilepsy. Patients and family members frequently have questions regarding long term prognosis, the chance of death, chances of living a normal life, the ability to work and be productive, etc. It is important to develop realistic goals and expectations, and to discuss the effects of epilepsy on other comorbid conditions. Issues of mobility, driving, and social stigma should be addressed. There are also many special populations with different needs: Infants and children; adolescents: people during the child bearing years; soldiers and veterans; and the elderly. And of course there always gender-related issues.
Patients should be encouraged to seek treatment and to seek assistance when needed. It is important for healthcare providers to emphasize positives but not hide the negative aspects of epilepsy, and to function as advocates for their patients. On the societal level, goals should include public education as well as education of government officials. Social issues and societal stigma should be addressed. An infrastructure must be put in place to allow for proper diagnosis and long term treatment of epilepsy, and to promote and effectively support ongoing epilepsy research.
The impediments to achieving these goals can be conceptualized as a series of “gaps” that must be overcome in order to optimize the understanding and treatment of epilepsy. These are: the knowledge gap, treatment gap, advocacy gap, education gap, research gap, and the legislation gap.
As research progresses and better treatments, and possibly cures, are discovered, it is important to continue to advocate that government agencies make epilepsy a priority. We must emphasize that essential medications need to be readily available, that surgery must be a front line treatment when medications fail, and that an infrastructure must be in place to support people with epilepsy. We must work to improve public education, to improve access to treatments, and to establish clear therapeutic and research guidelines. Old treatment models that may not adequately address the real needs of people with epilepsy need to be modified, and country-specific standards for epilepsy care must be developed. It is also essential to recognize that epilepsy is a chronic condition and may require different treatments and interventions at different ages. In order to be successful, everyone involved must be committed to this mission, so that we are all able to stand up for epilepsy and speak with one voice.
Solomon L. Moshé, M.D.
President, International League Against Epilepsy
Charles Frost Chair in Neurosurgery and Neurology
Professor of Neurology, Neuroscience & Pediatrics
Vice-Chair, Department of Neurology
Director, Pediatric Neurology & Clinical Neurophysiology
Einstein College of Medicine