Historically, epilepsy has been neglected, feared, and misunderstood. A veil of secrecy surrounding the disease has resulted in myths, superstitions, and a general lack of knowledge. This has impeded scientific progress toward finding answers to one of the oldest-known and most prevalent neurological diseases, leaving treatment and research efforts in the dark ages.
It is estimated that close to 1.5 of the 3 million Americans with epilepsy do not have complete seizure control, or only experience seizure control at the cost of debilitating side effects from medications. The need for a cure is clear.Many of the patients are children, who can experience up to hundreds of seizures a day. The impact on the developing brain ranges from learning disabilities to retardation, and in a disturbingly large number of patients, even death.
There is an increasingly large incidence of new onset epilepsy in the aging population as a result of strokes, brain tumors, and Alzheimer's Disease. In addition, for many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.
In normal brain function, millions of tiny electrical charges pass from nerve cells in the brain to the rest of the body. A seizure occurs when the normal pattern is interrupted by sudden and unusually intense bursts of electrical energy which may cause strange sensations, emotions, behaviors or convulsions, muscle spasms, and loss of consciousness. These unusual bursts are called seizures.
When a person has had two or more seizures which have not been provoked by specific events such as trauma, infection, fever, or chemical change, he or she is considered to have epilepsy.
Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve signaling chemicals (neurotransmitters), or a combination of these factors. Causes of epilepsy may include head injuries, brain tumors, lead poisoning, certain genetic diseases and some infectious diseases. However, in more than half the patients with epilepsy, the cause is still unknown.
LETTER FROM THE CHAIR
Welcome to the State of Research in the Epilepsies 2013 report. Within these pages, we hope you will find information that is both useful and compelling. We are grateful to the many people who contributed to this project because they—like you—recognize the urgency of moving our collective agenda forward, faster.
Like our last report of 2010, the news is encouraging, but also very sobering.
It’s encouraging because the last few years have brought a number of promising trends. Collaboration has increased throughout the field. On the whole, the community of epilepsy researchers is strong and growing. More young, bright scientific minds are joining our ranks, and we have witnessed an increase in epilepsy-related research publications and society memberships. And, most importantly, recent scientific advances have provided renewed hope that a disease modifying therapy or cure is within reach.
But, it is sobering because we continue to face major challenges. Per patient funding of epilepsy research continues to be inadequate to create long-overdue breakthroughs.
Basic and clinical epilepsy research is still primarily focused on seizure control rather than preventing or stopping the progression of the disease. And, finally, for scientific discoveries to translate into cures, our community needs to come together to develop and implement the infrastructures needed to support novel clinical trials.
For the 65 million people worldwide with epilepsy, progress is unacceptably slow. Children with uncontrollable seizures frequently face a lifetime of intellectual and developmental disability. Mortality rates among people with epilepsy are three times the rate of the general population, and sudden death rates are more than twenty times higher.
In this country alone, one in 26 people will develop epilepsy in their lifetimes. For their sake, we must continue to be vocal advocates for making epilepsy research a national priority. Our community is strong, energized and poised to make true strides towards eliminating seizures and their consequences. This collective commitment, along with a significant increase in funding, will help us to realize the true promise of research—transforming and saving lives.
I am dismayed because as I read through this report, the enormous challenges we face in advancing this field crystallize. The data confirms that funds for epilepsy research—from government, industry, and private sources—are totally insufficient given the magnitude of the problem and the status of our progress in the field. We know now that the vast majority of funding goes to incremental improvements in anticonvulsant medications (which are largely ineffective for about 40% of patients) rather than to uncovering underlying mechanisms that may lead to cures. We also know that the number of basic researchers in epilepsy is declining and that those involved have been less collaborative than their colleagues in other neurological disorders.
But, we also have great reason for hope. While our challenges are significant, I have every confidence that, as a community, we have the will and determination it takes to make meaningful progress toward defeating this disease. We are finally making strides in our efforts to communicate well beyond our community the critical importance and urgency of the need. This gives me tremendous faith that together we can turn the challenges detailed in this report into opportunities to make a real difference for our patients and loved ones.
It is within our power to make this happen, but we must act now. Lives are being ravaged and lost every day that we delay. I have tremendous hope that these reports in coming years will tell the stories of great progress toward our common goal—a cure.