Addressing Persistent Gaps in Epilepsy Care: M. Scott Perry, MD
M. SCOTT PERRY, MD
TRANSCRIPT
What are some of the most persistent gaps in epilepsy care today that awareness efforts like Purple Day can still address?
M. Scott Perry, MD: One of the biggest gaps is still awareness itself. I mean, it’s gotten a lot better over the last decade or so, with people understanding how common epilepsy is and how almost everybody probably knows somebody that is impacted in some way by epilepsy.
And that’s a great first step, you know. You get people to understand that it’s a common thing that we need to find answers to and address, because it impacts all of us. And with that comes more research, more acknowledgment of the condition, better treatment for the condition, and ultimately better outcomes for the people that have epilepsy.
How has our understanding of epilepsy heterogeneity evolved, particularly in distinguishing focal vs generalized syndromes, and what does that mean for treatment?
Well, epilepsy and its heterogeneity has continued to evolve. I mean, in its simplest form, people put it into focal and generalized categories, but then you start understanding that there are multiple seizure types that fall into each of those categories. Even when you understand the multiple seizure types within those categories, there are numerous reasons for those categories. And when you get into the reasons, within each category there are numerous subcategories.
You take genetics, for example. There are thousands of genetic reasons for epilepsy, and all of those can have their own unique presentation, their own unique comorbid symptoms, their own unique treatments, and their own unique outcomes. From the early days, where people thought of seizures as just one kind of event—like the traditional “grand mal” seizure people see in movies—to now, where we understand all of this detail about epilepsies, it’s really evolved a lot, and it continues to evolve.
How do you approach earlier identification and referral for patients who may be drug-resistant?
For me, when I see somebody that’s newly diagnosed with epilepsy, I try to give them a heads up of the road ahead from the beginning. I tell them that a great majority of people will be seizure-free on the first drug we ever use to treat them.
If they fail that medicine and we go to a second, a smaller proportion will become seizure-free with that second medication. And then after that, if you fail the second medication, the chances of becoming seizure-free get lower and lower with each additional treatment.
That’s when we get into the realm of drug-resistant epilepsy. And that doesn’t mean we’re not going to find a drug that eventually works, but it does mean you need to be thinking about all the possibilities. You need to understand all your treatment options. That can include traditional surgery, neuromodulation procedures, dietary therapy, and in this day and age, maybe even precision therapies.
So, if you’re not going to be one of those people who responds to the first couple of medications, you need to know that all those options are available. Surgery might not be right for everyone, but for some people it’s a great option. And it really comes down to comparing the risks and benefits of all those options to make the best decision for each individual patient.
How should neurologists better integrate holistic care into routine epilepsy management?
I think the most important thing is for neurologists to recognize that epilepsy is more than just seizures. That’s the first step. I don’t expect every neurologist or epileptologist to be able to manage every comorbidity—whether it’s sleep issues, cognitive problems, or behavioral concerns—but they need to know that these issues exist.
You have to take time during a visit to ask about something other than seizures. Ask patients, “Are you having any other problems you want to talk about?” And it’s not necessarily because you have all the answers, but because you care enough to ask and can help guide them to someone who does.
For some people, seizures are actually one of the least of their problems. They may be able to deal with the seizures, but it’s everything else that comes along with epilepsy that really affects their quality of life. And especially in pediatrics, it’s important to acknowledge the caregivers. They dedicate a lot of time to taking care of the child and not a lot of time to themselves. Reminding them that they need to take care of themselves is critical, because that’s ultimately how they’re going to be able to take care of their child.
How do you counsel patients and families about SUDEP and reducing risk?
SUDEP is a tough topic. And honestly, when I reflect on it, I know I can do a better job talking about it. Sudden unexpected death in epilepsy is something that we have to acknowledge happens. It’s rare, and for most people the risk is low, but every person with epilepsy has some level of risk.
Patients need to know about it, because it helps them understand why it’s important to take their medications, why sleep matters, why lifestyle matters, and why we push so hard for seizure control. There are also ways to potentially mitigate risk, whether that’s monitoring devices or other strategies, but people have to be aware of them.
It’s not an easy conversation, especially with someone newly diagnosed, because you’re already giving them a lot to process. But the research shows that patients want to know about SUDEP, so we need to talk about it.
What gives you the most optimism about the future of epilepsy treatment?
I live in the genetic world, so what excites me most right now are treatments that are aimed at true disease modification—treatments that are targeting the underlying genetic cause of epilepsy. Most of the therapies we’ve had historically are anti-seizure medications. They control seizures, but they don’t address the reason someone has epilepsy.
Now we’re starting to see therapies that target those underlying causes. And that has the potential not just to control seizures, but to improve other aspects of the disease as well. We’re also seeing drugs that are becoming more specific. Instead of targeting every sodium channel, for example, we’re trying to target the specific channel that’s causing the problem in a particular patient.
We’re moving toward precision-based therapy, where we’re not just treating seizures, but treating the reason a person has seizures. And that’s a pretty exciting place for the field to be.
Transcript edited for clarity.