We Must Shine a Light on Epilepsy

Imagine you're in middle school, standing at the front of your English class and reading aloud from a book. You think it’s going fine, but when you finish the passage and look up at your classmates, they're wearing odd expressions on their faces. Your teacher also looks troubled. 

You don't understand. Did you say something wrong? Why is everyone looking at you like that? This is one example of what a seizure can look like: a staring "spell,” where someone loses consciousness and becomes unresponsive for five to 15+ seconds, but physically looks as if they are daydreaming or taking an unnaturally long pause. 

Seizures come in many shapes and forms. The reason for this diversity in symptoms is the diversity of the brain itself. Everyone is wired differently. But while anyone can have a seizure (according to The American Journal of Medicine approximately 10% of people will experience one in their lifetime), experiencing them on a recurring basis is the main hallmark of epilepsy.

Epilepsy is a common, chronic neurological condition affecting people of all ages. It is most often diagnosed in childhood, adolescence, or older age and has a prevalence in the U.S. of approximately 1.8%, according to Epilepsy & Behavior. People with epilepsy are more susceptible to having seizures due to a lower seizure threshold compared to people without epilepsy.

Seizures come in many shapes and forms. Someone can be fully or partially aware, able to carry on a conversation, or completely lose consciousness. Someone may have no motor involvement or lose motor control and have stereotyped movements such as finger motions, lip-smacking, or limb shaking (the latter, tonic-clonic seizures, are less common, but the type most often portrayed by Hollywood). Seizures can even manifest as strange bodily sensations, odors, lights, and feelings.

Epilepsy is both one of the oldest recognized and one of the most misunderstood medical conditions in human history.Once called the “falling sickness” and “the sacred disease,” there is a long history of stigmatization of people with epilepsy. Seizures were viewed as supernatural or divine phenomena and misconceived as witchcraft, possession, or prophecy. Today, people with epilepsy continue to face discrimination and prejudice in social relationships, schooling and education, or in the workplace. 

Managing seizures and quality of life is also impacted by systemic factors, such as lack of public transport, health care accessibility, lack of rural providers, treatment costs, and lack of appropriate accommodations. 

But while seizures are a feature of epilepsy, they represent only one facet of the condition. Epilepsy is a network-level disorder that affects neural communication, which may have consequences for other brain functions, influencing things like memory, sleep, and social interactions. These other, less visible aspects of living with epilepsy also affect quality of life and daily functioning.

Further epilepsy research is needed, but large disparities in epilepsy research funding have persisted for decades. Compared to other major neurological conditions, epilepsy receives a significantly smaller proportion of research funding and support. Approximately 70% of patients can control seizures with medication, but existing medications can also carry unwanted side effects. In the approximately 30% of patients who continue to experience seizures even with medication, surgery, neuromodulation, or dietary interventions may be treatment options for some.

However, other patients are left to navigate symptoms without efficacious treatments. Approaches to address the comorbidities common to epilepsy, such as sleep apnea, depression, and memory impairment, may also help improve daily functioning and health. More funding support could meaningfully advance and improve treatment options for patients.

Unfortunately, this past year has been particularly detrimental for biomedical research, including epilepsy research. In addition to the gutting of National Institutes of Health (NIH) programs, the Centers for Disease Control and Prevention's epilepsy research program suffered massive funding cuts, jeopardizing its continuation. This was the only program in the country tracking epilepsy and supporting public health epilepsy initiatives on a national scale. Among their efforts is the Managing Epilepsy Well network (with Emory as a partner), which has been instrumental in promoting self-management techniques to improve quality of life for people with epilepsy.

While much work is needed to build back and enhance epilepsy research infrastructure, a coordinated effort is currently underway to pass the National Plan for Epilepsy Act. If it passes, it will unify efforts at the federal and non-federal levels for a national epilepsy response plan, with the goal of improving the lives of the millions of Americans who live with epilepsy.

Even though disability is a common part of the human experience, we don't do a good job of discussing it as a society. Lack of representation, dialogue, and public understanding propagates misconceptions about epilepsy and negatively affects those living with it. In addition to the overt health challenges, one of the most difficult aspects of living with epilepsy is how isolating it can be. My hope is that, together, we give epilepsy the attention it requires and deserves.