Epilepsy Unveiled: Addressing Myths, Treatment Gaps, and New Innovations

Luis Tornes, MD

Epilepsy affects more than 65 million people worldwide, making it one of the most common neurological conditions, yet misconceptions and stigma around the disorder remain widespread. Purple Day®, observed annually on March 26, was founded to raise global awareness about epilepsy, reduce the social barriers faced by those living with the condition, and highlight the progress being made in epilepsy care and treatment. This day, serves as a powerful reminder of the need for understanding, compassion, and innovation to support patients, their families, and the medical community.

As we mark Purple Day, it’s an opportunity to delve deeper into the realities of epilepsy—dispelling myths, showcasing advancements in care, and addressing the disparities in access to treatment. From exploring what epilepsy truly looks like beyond the dramatized portrayals on TV to examining the impact of social and economic factors on care, conversations like these help bring clarity and context to a condition that impacts so many lives.

In this discussion, NeurologyLive^® sat down with Luis Tornes, MD, a neurologist and director of Baptist Health’s Epilepsy Program, to explore some of the most pressing issues in epilepsy care. Tornes shed light on the barriers to treatment, the myths surrounding seizures, and the innovations that are transforming outcomes for patients. Above all, he provided context on the steps needed to take to create a more inclusive and supportive environment for individuals living with epilepsy.

***Purple Day is owned by The Anita Kaufmann Foundation and is used under license from The Anika Kaufmann Foundation***

NeurologyLive: What aspects about epilepsy need greater awareness and attention from just a clinical and public perspective?

Luis Tornes, MD: I think one of the biggest things within the field of epilepsy that needs more attention is the range of treatment options we now have. Obviously, medicine is always evolving, and new options are coming out all the time. I think one of the most important things now is that we truly have options for a potential cure for epilepsy in some patients. Even to this day, though, it’s still a bit of a struggle to get patients access to evaluations for surgery.

For example, about one-third of all epilepsy patients have drug-resistant epilepsy, which means they’re on two anti-seizure medications but still continue to have seizures. These patients likely won’t ever achieve seizure freedom with medications alone. That’s where alternatives like resective surgeries, ablative surgeries, or neuromodulators come in. These options can potentially achieve seizure freedom and significantly improve the lives of these patients.

But even though these treatments have been available for some time and are continuing to evolve, there’s still a significant gap in patients being referred for these surgeries—even by epilepsy specialists. So, raising awareness about these treatment options is critical, especially for those in areas with limited access to neurologists or epileptologists. Expanding referrals to larger centers for surgery is one of the most important steps we can take because these treatments can be life-changing for patients who are still struggling with seizures despite being on multiple medications.

What parts of epilepsy are maybe a little bit misconstrued, or are there myths we continue to get wrong about epilepsy?

One of the biggest misconceptions is shaped by what people see in TV shows and movies. When most people think of epilepsy, they think of dramatic seizures like tonic-clonic or "grand mal" seizures—where someone falls to the ground, shakes, and maybe foams at the mouth. That’s the image people associate with epilepsy because it’s what gets portrayed in media.

But there are so many different types of seizures, and not all of them look like that. I’ve had patients say, “What do you mean I have epilepsy? I’ve never had one of those.” And that’s the thing—epilepsy isn’t just one type of seizure. For example, there are absence seizures, which often look like a blank stare and can be easy to miss if you’re not paying close attention. Adults might have focal unaware seizures, which can also look like a blank stare for a few seconds.

There’s a whole spectrum of seizure types, and it really depends on where in the brain the seizure originates. The brain controls so many different functions, so depending on the affected area, the seizures can present very differently.

Another misconception is the assumption that people with epilepsy have a poor quality of life or are really impaired. While that might be true for some patients—especially those with drug-resistant epilepsy—many others are seizure-free with medications or surgery and live completely normal lives. There are so many treatment options now that epilepsy doesn’t always have to define someone’s life. That’s one of the myths we need to break: epilepsy isn’t just one thing, and it doesn’t automatically mean someone is really sick or disabled.

As a director of the Epilepsy Program, how have you tried to make epilepsy care more efficient?

Improving efficiency in epilepsy care really comes down to teamwork. While I lead a great department within neurology and epilepsy, it’s not just about us—it requires a multidisciplinary approach.

It starts with quickly identifying the patient. For example, if someone comes into the emergency department after having a seizure, we need those providers to identify that the patient might need to see a neurologist or epileptologist and streamline the referral process. From there, it’s about getting the patient into the right clinic for evaluation and treatment as quickly as possible, with no unnecessary delays.

Once they’re in our care, it often involves collaboration with other specialties—neuroimaging for advanced scans, neuropsychology, neurosurgery if surgery is being considered. It’s really about keeping everyone on the same page so that the process from diagnosis to treatment is as seamless as possible, without patients falling through the cracks.

I feel very fortunate to work with a great team here—neurologists, neurosurgeons, neuropsychologists, and radiologists—who all work together to reach the same goal of providing the best care for these patients.

What do we know about epilepsy and how it differs based on socio-demographic and socio-economic factors?

We know these factors play a huge role, not just in epilepsy but across medicine. For patients in lower socio-economic groups, access to healthcare is a big challenge. If someone struggles to see a primary care doctor, imagine how hard it is to see a neurologist or epileptologist.

In some cases, the necessary resources—like imaging or EEGs—just aren’t available in their community. On top of that, transportation can be a major issue. For example, in Florida, if you’ve had a seizure, you can’t drive for six months. If you’re unable to afford alternatives like Uber or Lyft, just getting to your appointment can become a huge hurdle.

And it’s not just socio-economics—demographics also influence how epilepsy is perceived and treated. Some cultural beliefs and perspectives might affect how patients feel about certain treatments. That’s why it’s so important to have healthcare providers who reflect the community they serve and can connect with patients on a cultural level. It really is a team effort to understand each patient’s unique circumstances and work together to get them the best possible outcome.

What are the greatest remaining unmet needs for the epilepsy community?

Access is still one of the biggest challenges. There’s a large gap between the first diagnosis of epilepsy and patients being referred for surgery, especially for adults. We need to improve referral systems and help community practices better manage these patients by connecting them to larger centers. The other big area is personalized medicine. Right now, epilepsy treatments are often based on what works for large groups of people, but the future lies in tailoring treatments to each individual. With advancements in targeted therapies and precision medicine, I think we’ll soon be able to pinpoint the best medication or treatment for each patient based on their unique characteristics. It’s an exciting time, and I’m optimistic about where the field is headed in terms of providing better, more personalized care for patients with epilepsy.

Transcript edited for clarity.