📷 Epilepsy.com
Journalist: Haleema Ahmed
Haleema Ahmed:
Hello everyone and welcome back to SciSection. I’m Haleema, your journalist for this week, and today we are delighted to have Dr. Jacqueline French. Dr. French is a professor of neurology at the NYU Langone School of Medicine, Founder and Director of the Epilepsy Study Consortium, and the Chief Scientific Officer of the Epilepsy Foundation. Thank you for joining us!
Dr. Jacqueline French:
It's my pleasure.
Haleema Ahmed:
A large portion of your career has been dedicated to researching therapeutics for epilepsy. Before we delve into that, what drew you to medicine and subsequently the field of neurology?
Dr. Jacqueline French:
Well, I always felt that the body was a fascinating thing and having a career where you can help people along the way is fabulous. I, interestingly enough, had two parents who were both physicians, and who both encouraged me not to go into medicine, but they couldn't discourage me. As far as going into neurology, I see it as the rest of the body is basically there to keep the brain going because the brain is what makes us who we are. You can replace the heart, you can replace somebody's lungs with somebody else's lungs, you can replace the liver, but if you replace the brain, then the person is not that person anymore. Therefore, the brain is what makes us us.
Haleema Ahmed:
Since the brain is such an amazing organ, obviously, what fact about the human brain do you think is the most interesting or shocking that people may not know?
Dr. Jacqueline French:
When my kids were little, they had a science teacher that said you only use 10% of your brain, which seems to be a fact that runs around a lot. But I'm here to tell you that you need all the different parts of your brain to do the things that we do. It is amazing that different parts of the brain, as we study, have such unique and interesting features, and we are still learning an enormous amount about them. In my career, I have also learned a lot about the brain just by listening to people describe their seizures. Seizures are electrical excitations of different parts of the brain and when that part of the brain gets excited, you can see exactly what that part of the brain does. Sometimes those experiences cause people to have a feeling of profundity.
Haleema Ahmed:
Speaking of seizures, how did epilepsy become your passion area?
Dr. Jacqueline French:
If you're fascinated by the brain, as I just mentioned, you have to be fascinated by epilepsy because it gives us such a window into the living brain as people are walking around and talking and being who they are. But on top of being so fascinating in regards to listening to what happens to people during a seizure, the wonderful thing about being a doctor who takes care of people with epilepsy is that you have such an impact on their lives. You have a capability, unlike other areas of neurology, where you can take someone who is severely disabled by their disease, give them the proper treatment and return them to completely normal function. That is a fascinating and wonderful thing. In addition, I really enjoy the fact that I have long term relationships with my patients. Some of them I've taken care of for 30 years. I've seen them go from, in some cases, children, to adolescents, to adults who have their own families. That has been a very rewarding part of my career as well.
Haleema Ahmed:
We have spoken about epilepsy and seizures, how you are able to have these long term relationships with your patients and how oftentimes, epilepsy can really hijack a large portion of a person's life. Since that is going to be a large part of our conversation today, it would be great if you could discuss really what is epilepsy? How does it manifest in patients? How do physicians go about diagnosing it and treating it?
Dr. Jacqueline French:
Epilepsy is the condition where people can have seizures. It means that the brain is in a state where it is too excitable and too electrically excitable. A seizure is basically an electrical storm in the brain. Lots of different things can cause one single seizure. For example, if you don't have enough oxygen to your brain, or if you don't have enough glucose or sugar in your brain. But epilepsy is the disease where the brain is hyper-excitable and a seizure can happen at any time. That is the very problematic thing for people with epilepsy is the unpredictability. You may be fine one minute and then the next minute you are having a seizure. You may be behaving unusually, or you may even fall down to the ground and be shaking all over. Your life may be at risk because you are swimming and now you are about to drown. It's the unpredictability of when that seizure will occur that makes people's lives so very complicated when the seizures are not controlled. But fortunately, we can control those seizures about two thirds of the time, very easily with the standard medications that we have. My career has really been to try and find treatments for those other one third of people whose seizures cannot be controlled by the medicines that are currently available. Also, I am trying to make sure that the two thirds of people who can be controlled, have the best possible quality of life and that their medicines are not slowing them down or preventing them from doing the things that they want to do. Because in fact, if you have epilepsy, you may need to be on medication for many, many years. The medication therefore, should be something that's very well tolerated.
Haleema Ahmed:
There are medications that do exist now and the field is continuously expanding for epilepsy. How has the diagnosis and treatment of epilepsy evolved over time?
Dr. Jacqueline French:
It has evolved, but maybe not as much as we would like it to.Some of the medications have been around for 50 years and we are still using them and some of them are newer and a little gentler on the body. Fortunately, that is one thing that has evolved over time. But unfortunately, all of the medicines that we currently use, we call anti-seizure medicines because all they do is suppress the symptom and the symptom is the seizure. They don't treat the epilepsy underlying, so they don't treat the brain's fundamental hyperexcitability. That means that if you stop the medication, the seizures will return. In many cases, we are looking for new therapies that actually treat the underlying disease. Hopefully that will happen in my lifetime and that's a very exciting thing. In addition to medication, we also use other things to get seizures under control. If we can find the area that's hyperexcitable in somebody, we can sometimes remove that area with a surgery and return somebody to a seizure free state. We also use stimulation devices and dietary therapy so we have lots of arrows in our quiver to try and get seizures under control. It's very important for somebody with epilepsy to not give up on trying to find things that control their seizures because there are many options and opportunities
Haleema Ahmed:
Like other diseases that can manifest differently depending on the patient, how can epilepsy differ between patients depending on the form of epilepsy that they have or where they live?
Dr. Jacqueline French:
I want to say something really important and that is that people think that epilepsy is only one thing, which is what I call the television seizure. The seizure where people fall down, they shake all over, they lose consciousness and they foam at the mouth, but that, in fact, is not the most common type of seizure. That is a seizure called a tonic clonic seizure, but that is not the most common type of seizure. The most common type of seizure is a focal seizure which is coming from a small area of the brain. I alluded to that before that the seizure will take on the characteristics of that particular part of the brain. If that's the part of the brain that produces emotion, then you may have an emotion at the time of that seizure. If that seizure is the area that makes your right hand move, for example, then you'll have right hand movements during the seizure and the seizure itself can be subtle. A lot of times, people don't even know they're having seizures until they have a bigger motor seizure. We use the phrase SSSSS, which stands for short sudden strange similar spells. Often, people are having short sudden strange similar spells which is attributed to a sudden feeling of panic that comes out of nowhere or a sudden dreamlike state of dejavu that actually is a seizure. It just keeps recurring and people don't know why it's happening. They don't know that they need to seek medical care for it. Seizures can really manifest in every way that whatever function the brain can have. It can be something visual. It can be something you smell, it can be a sensation, or it can be an emotion. It can be a dream of some sort and people need to know that
Haleema Ahmed:
That is incredibly fascinating. I think I definitely subscribed to the TV version of epilepsy and so I had no idea that it really can manifest so differently and can hijack certain areas of the brain. How can patients with epilepsy be impacted socially in terms of everything from, as you mentioned before, their ability to go swimming with family or their ability to drive or their ability to work in certain fields?
Dr. Jacqueline French:
Unfortunately, the very first thing I have to say is that there is a lot of stigma attached to epilepsy, and that's been throughout history. We know that even back in the middle ages, people were thought to be possessed by the devil when they had a seizure. That is because again, depending on the area of the brain being hijacked, the person can behave not like themselves and can behave very strangely. That is scary to people when they are watching it. People, when they think about epilepsy, think somebody has a mental disorder or they are deranged and they really don't understand what is really happening. There is a lot of stigma and a lot of people stay in the shadows. They don't want to reveal that they have seizures or epilepsy. We hear about famous people who have epilepsy because they had a seizure that was witnessed and everybody was very surprised even though that person may have had epilepsy for a very long time and has hidden it well. As you said, there are many other things that people have to be careful about depending on what kind of seizures they have. Not everybody has seizures where they lose awareness, but if they do, they cannot drive a car and they may not go just down the street to the drug store. If they have a seizure, while they are walking down there and they become incapacitated, they may not have help around and could get hurt. There may be severe restrictions depending on how often the seizures occur, how severe they are, and whether there is loss of awareness. We tell people not to swim alone, of course. But, people have to be careful even in their own houses because, I don't know if you know, but a former football player in the United States who had epilepsy, which happened after a car accident, recently passed away. He passed away in the shower and there are a number of reasons why people unfortunately can pass away from a seizure, although it's still uncommon. Unfortunately, one of the ways is that they are in a bath or a shower and they have a seizure, fall down, cover the drain, the water fills up and they actually drown. You don't only drown when you are swimming in the ocean or swimming in a pool but you can actually drown in a bath or a shower. People do have to be careful, some more than others, depending on the way the seizures manifest. The unpredictability is very problematic. The very last thing, not to be overly scary, but everybody with seizures has a very small chance of death from something called sudden unexplained death in epilepsy or SUDEP. This is usually associated with the big convulsive seizures. In SUDEP, after the seizure passes, the person stops breathing and doesn't start breathing again, and they pass away. Often, that happens when people are in bed asleep and nobody is around so sometimes, family members do feel like they have to keep very close eyes on people with epilepsy to make sure that they are safe.
Haleema Ahmed:
That definitely is very unfortunate and very common in the news. You do hear major celebrities who have had epilepsy do unfortunately pass away because no one is there when they are having a seizure. But hopefully, as we have more of these conversations about epilepsy, a lot of the stigmas that you were talking about can be alleviated, and we can further invest in this research. Now, moving into the present day, during the ongoing pandemic, research about the relationship between epilepsy and COVID 19 has become more common. Are patients with epilepsy more susceptible to worsened outcomes when it comes to COVID and can COVID worsen a patient's epilepsy?
Dr. Jacqueline French:
A very good question. I actually got together with a number of my international colleagues to write about this. The risks of the pandemic to people with epilepsy is mostly that they are isolated. They are already isolated by their disease, and they may become more isolated. They may have difficulty accessing their medication because they don't want to come out of the house. They may, if they get confused after a seizure, pull their mask off in public, and that could put them at risk, but they are at no greater risk of getting severe COVID than anybody else. There is a relationship between having epilepsy and having severe COVID. There are rare cases where people have reported that their seizures got worse, mostly because they had a fever and fever and illness can worsen seizures. After vaccination, people very rarely report that they have a seizure. But that is uncommon. When you look across hundreds of thousands of people, they actually do surprisingly well even when they do contract COVID. We do recommend that everybody with epilepsy get a vaccine, get a booster, just like everyone else.
Haleema Ahmed:
Exactly. Make sure to get your vaccine since we definitely need to get this pandemic over with. Lastly, for over two decades, you have worked with the Epilepsy Foundation in a variety of leadership roles. Why do you think it's important to invest in epilepsy research?
Dr. Jacqueline French:
We are so far away from being where we want to be and we are so close, I should say. We've been working a long time to develop new therapies that actually treat the underlying epilepsy as well as treating the seizures better than where we are now. We also are very close, for example, to having devices that can forecast when people are having seizures. As I said before, one of the worst things about having epilepsy is how unpredictable it is and imagine how much better it would be if people could plan and predict, even if we couldn't control their seizures. We are very close to that. It's so exciting to work in a field where we are making such great strides, but we need the resources to do it. Everybody should support the Epilepsy Foundation. We are dedicated to new therapies, new diagnostics, and a better life for people with epilepsy.
Haleema Ahmed:
And on that note, thank you so much Dr. French for joining us today to discuss your work, epilepsy, and its relationship to COVID-19. Be sure to check out the Epilepsy Foundation foundation website at epilepsy.com to learn more about how to get involved and donate.