Epilepsy is a complex spectrum of disorders that affects roughly 3.4 million people in the United States and more than 65 million people worldwide. It can occur at any point in a person’s lifespan but infants, children and older adults are particularly vulnerable. The cost of epilepsy to the U.S. economy is estimated at $10-12 billion each year, encompassing direct medical and nonmedical costs and indirect social costs such as lost productivity and employment.

Today we have more treatment options than ever before. Treatments can be tailored to specific types of seizures and epilepsy syndromes. Safer therapies can be offered to pregnant women, infants, the elderly and those with other medical conditions. These advances are largely due to the tireless efforts of researchers, the vital funding support of non-profit organizations and the critical investment at the federal level of the National Institutes of Health (NIH).

Trying to find a cure

One in three people with epilepsy continue having seizures despite available treatments. The available therapies treat seizures but have yet to stop or prevent epilepsy. Several epilepsies of infancy or childhood still lack effective treatments. Significant progress has been made in learning how genetic conditions, lesions such as traumatic brain injury, inflammation, hypoxia-ischemia, brain malformations, disorders of the immune system, toxicity or metabolic conditions may lead to epilepsies, through a process that we call epileptogenesis. Yet, with many conditions, the cause is still unknown.

Deciphering epileptogenesis is the holy grail of epilepsy research that may deliver a cure for the disorder rather than just treat symptoms. It is an unsolved puzzle that becomes increasingly complex as we learn more about the multifaceted pathways and distinct networks involved in various epilepsy syndromes or the individual factors that control epilepsy. These factors include age, gender, stage of the disease, etiology, genetic background, the environment or other conditions.

For every person with epilepsy, NIH awards only about $47 each year toward epilepsy research.

Solving the puzzle of epilepsy and delivering better therapies for patients will require new research approaches and innovative tools, more collaborations among researchers and increased funding at all levels, whether exploratory basic science, preclinical or clinical. NIH has played a critical role in supporting research innovation from single labs and multicenter research collaborations targeted to specific questions.

However, epilepsy research funding is still considerably lower than that for other major neurological diseases, particularly compared to its prevalence and public health impact. For every person with epilepsy, NIH awards only about $47 each year toward epilepsy research. Clearly, more needs to be done to create a brighter future and provide hope of a world without epilepsy.