Epilepsy — a disorder of the brain that causes unpredictable seizures — is more common than many realize. At least 3.4 million U.S. children and adults are living with the disorder, according to a recent Centers for Disease Control and Prevention (CDC) report. It is more common than autism, Parkinson’s disease, multiple sclerosis and cerebral palsy combined. One in 26 people will develop epilepsy in their lifetime, and it’s the second leading cause of death from a neurological disorder behind stroke.

Epilepsy can occur in people at any age, infants through seniors. While epilepsy can be caused by head trauma, stroke, a tumor or an infection, at least 60 percent of the time we cannot determine the cause. Seizures can take many forms, from convulsions and rhythmic jerking movements to confusion, staring and lapse of attention.

Because many do not understand epilepsy, people with the disease live with a stigma that can significantly impact their lives and work. It is important to diagnose and effectively treat epilepsy as soon as possible, not only to prevent lifelong disability and sudden unexpected death in epilepsy (SUDEP), but also to improve quality of life.

How to prepare young people with epilepsy

Epilepsy varies widely through life and presents different challenges at various ages and stages. Infants and children diagnosed with epilepsy, with the exception of some very rare and difficult types, can usually be managed effectively if symptoms are recognized early by parents and pediatricians. Adolescents should be prepared to transition to living with epilepsy as adults. Before they turn 12, their parents and doctors should start the discussion about how to care for themselves, including taking medications. 

What adults with epilepsy should know

Adults who aren’t effectively treated can suffer from depression, anxiety and impaired memory and thinking skills, which is why it is important to see a neurologist or visit an epilepsy treatment center.

Women in their childbearing years should talk to their gynecologist/obstetrician before they get pregnant to see if the medications they are on are safe for mother and baby. During pregnancy, women should be cared for by both an obstetrician and a neurologist. They should also recognize that some anti-epileptic drugs may make certain birth control medications less effective. Seniors should talk to their doctors if they develop seizures, which may be related to stroke, Alzheimer’s disease or other neurological disorders.

Epilepsy varies widely through life and presents different challenges at various ages and stages. 

The goal of treatment at every age and stage is to eliminate seizures and side effects of treatment. Those who continue to have seizures or are bothered by side effects should be referred to an epilepsy specialist or epilepsy center. 

We are making great gains in diagnosing and treating epilepsy. We have identified genetic links to some kinds of epilepsy, while newer medications with fewer side effects and disease-modifying therapies designed to treat epilepsy at the cellular level are on the horizon. But more research and funding is desperately needed. Read on in this special section to learn about progress and what more needs to be done.