Individuals with epilepsy can lead full, regular lives, including having children, an active social life and a rewarding career, although it is important for their health that they seek and receive appropriate care on a timely basis, says an expert from global health system Cleveland Clinic.

His message reflects the focus of International Epilepsy Day organizers to support efforts by the World Health Organization to close existing inclusion and treatment gaps.

Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally, according to the World Health Organization.

The condition is characterized by periodic and involuntary seizures, ranging from mild to severe, and if these are diagnosed and controlled, epilepsy patients can lead a full, healthy life, says Imad Najm, MD, Director of the Epilepsy Center at the Cleveland Clinic Neurological Institute.

“It is important to dispel the myths and misconceptions surrounding epilepsy as these could cause individuals with the condition to face prejudice at school, work and in social environments, and it could even prevent them from seeking the care that they need, or discourage them from taking prescribed medications,” said Dr. Najm.

“This is concerning as uncontrolled seizures impact negatively on a person’s health and damage the affected neurons in the brain. In addition, without treatment, people who have seizures could fall, drown, have accidental burns, or even suffer sudden unexpected and early deaths.”

Dr. Najm adds that misperceptions about what a seizure looks like could also lead to individuals dismissing mild seizures or being misdiagnosed when seeking help.

“While people might expect someone with epilepsy to have convulsions and foam from the mouth, most seizures are subtle. For example, a seizure might present as prolonged staring and rapid eye blinking; unusual behavior with chewing movements or hand-picking movements; a strong feeling of déjà vu; or having either rigid or overly relaxed muscles. It is much rarer to see jerking of the arms, legs, or head, falling down or loss of consciousness,” he says.

Fortunately, diagnosing epilepsy can be quick and easy, Dr. Najm says. The diagnosis can be done through an electroencephalogram (EEG) test that records the brain’s electrical activity, and the possible cause of the disease may be assessed through a magnetic resonance imaging (MRI) scan.

Dr. Najm adds that treatments have advanced considerably over the past decades, particularly for patients who have been unresponsive to traditional medications. “The majority of patients can successfully control their seizures with affordable medications that have been around for many years and proven safe. However, in cases where two or more traditional medications have failed, we now have more options to consider,” he explains.

A medication with the generic name cenobamate, which was approved by the FDA in the U.S. in 2019, has shown to be effective in 20-30% of those patients for whom multiple other medications have failed, says Dr. Najm.

If patients’ seizures cannot be controlled by medications, the solution might lie in surgery, with many more patients now regarded as surgical candidates than in decades past, Dr. Najm adds.

“Thanks to improved imaging techniques, as well as software that leverages machine learning and other AI technologies to analyze images, we can more easily identify the small part of the brain from where the seizures are emanating, so that it may be removed. In around 50% of cases, this surgery can be curative, meaning the patient lives a seizure-free life. In addition, we are offering surgery to patients in higher age groups than ever before as older people are generally healthier than previously, and the safety of surgery has improved over the years.”

Dr Najm says he salutes global efforts by the joint organizers of International Epilepsy Day – the International Bureau for Epilepsy and the International League Against Epilepsy – to address what they term ‘low levels of health literacy and high levels of misunderstanding and misconceptions’ about epilepsy.

“It is very important that common misconceptions do not put a patient off seeking or sticking to a treatment plan. If their seizures are controlled, these individuals can live completely regular lives and it is important for employers and society to recognize this fact,” Dr. Najm concludes.