Car Accidents Caused By Epilepsy! The Human Epilepsy Project - Jacqueline French, NYU Langone Comprehensive Epilepsy Center, USA
5% of a cohort* had at least 1 car accident (and up to 3) before their epilepsy diagnosis! Hear about the global Human Epilepsy Project by Jacqueline French and learn how seizures can present in so many different ways!
*450 people
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Jacqueline French
”5% of our people had had a car accident (at least one) during a seizure before they got diagnosed!”00:09 Torie Robinson
Fellow homo sapiens! Welcome to - or welcome back to - Epilepsy Sparks Insights.
The more I learn about the epilepsies the more, I wonder, how much more common they might be, than we actually realise. Like, How many people are wandering around at work, school, university, having an “unusual feeling” which could later be diagnosed as having been an epileptic seizure?!
Well, there’s been a study providing insights into this - led by the cool, passionate, epilepsy specialist neurologist Jacqueline French - who is here to tell us more!00:43 Jacqueline French
I am an epilepsy specialist. I work in New York at NYU (New York University Hospital). I've been there for the last 12 years or so. And in addition, I split my time between that and doing research (clinical research) there. And I also run a nonprofit called the Epilepsy Study Consortium - that our role is to try and speed new therapies to people through improving the trials that get the therapies to people. And then my third role is that I'm Chief Medical Innovation Officer of the Epilepsy Foundation; which is the patient facing organisation in the United States. And I'm supervising the research team there, but also, sort of patient facing for other medical matters.01:37 Torie Robinson
We met actually in… I'm gonna pronounce it wrong, but “Lausanne”… am I saying that right?01:42 Jacqueline French
Lausanne, Lausanne, yeah!01:44 Torie Robinson
Oh, you're better than I, yes, and there's like a lot about AI and stuff like that about epilepsy so you're like… [you have] your finger in all these different pies, right?01:51 Jacqueline French
Yeah, so actually the reason that I was there at that meeting is because, through the Epilepsy Foundation, we… you know, back to that issue of trying to improve the conduct of trials and to get new therapies and new devices to people - we run a research roundtable both for therapeutics and for diagnostics, which is mostly diagnostic devices - where we bring in the regulators and the payers and the people who use those devices (because it is a very long road for the people who are innovating in that space. They may have a fabulous idea about what they want to do, but getting it through the regulatory process, getting someone to pay reimbursement for it, and having a device that people actually want to use (!) is a tall order!). So, we're trying to help with that. And so, we are - at the Epilepsy Foundation - we are all things devices. We actually have (which is a good thing!), we have 20 companies signed up for our research round table! So, there's lots of activity of different companies and they're doing all different kinds of things from wearable devices to platforms that people can manage their data on, to cameras that, you know, sit over the bed, for example, and look at movement in the middle of the night, implantable devices, you name it! So, that's why I thought it was important to go to Lausanne, and it was a fantastic meeting.03:28 Torie Robinson
We were gonna talk actually about (and this is of course all related), your Human Epilepsy Project, which I understand has been going for a number of years now. You've got, like, hundreds of people involved. Can you tell us a bit about that, please?03:42 Jacqueline French
My research and, you know, sort of my personal passion and interest is when somebody develops epilepsy - and of course, because I've been treating people with epilepsy for so long, we are, you know, it's maddening that 2 people can present, looking almost identical to us, and one of them, their very first medication that they're provided works for them and as long as they take it every day, they'll do very well and be able to do everything that they wanna do. Whereas, another person who looks almost the same, takes medication after medication after medication and nothing works. So, the original intent of the project was to enrol people with newly diagnosed, what we call “focal epilepsy”, which is epilepsy that comes from 1 or 2 spots in the brain - and follow them for as long as we could to see what the outcome was; whether they responded to medication, what medication they responded to, and for how long. But do all that “forward looking”, not looking what we call “retrospectively” (looking backwards), but actually follow those people in real time and get every piece of information that we possibly could on them. So, including what did their imaging, their brain imaging looked like? What did their brain waves look like? We actually drew blood on them for their DNA for other things that are in the bloodstream that could tell us something. And, you know, the idea was to look at all of these things, you know, the type of seizures they had, the way they described them, and see whether there was something that could distinguish those that respond to medication from those that don't. And it was 35 centres and multiple countries and continents. So, really very, very broad. And it ended up being about 450 people! So, we did enrol those people and we followed them for up to 6 years.05:57 Torie Robinson
That's long!05:58 Jacqueline French
Yeah, it's a lot of work! And we found that we did learn a lot. We're still trying to sort out, you know, what the markers might be of who is treatment resistant and who's treatment sensitive - that work is ongoing. And, you know, one of the intents of the study was to gather all this information and then let all of the researchers all over the world take a stab at it, right. So, people can email us and say “I want to look at the EEG and see whether I can find a signal in there.” or “I want to look at the imaging studies and I want to see if there's something there.”. So, we have different teams looking at the blood samples, looking at the EEG, and hopefully somebody is going to find something, but in the meantime, just the process of gathering all this information has allowed us to find out a lot of really interesting things. And, you know, one of the ones that I mentioned [that] I wanted to talk about today is we enrolled patients within 4 months of their initial diagnosis. Right, so that's the time that they learned that they had epilepsy and they got started on the medication. But it turns out…07:09 Torie Robinson
Okay.07:10 Jacqueline French
Right, so that's the time that they learned that they had epilepsy and they got started on the medication.07:16 Torie Robinson
And what age do they tend to be?07:17 Jacqueline French
So, we enrolled people from the age of 12 and up. Because there had already been a study in children, so we wanted to focus on adolescents and adults. And what we found out is when we talked to these people… so now they know that they have seizures, right? They know what their seizures feel like, so we asked the simple question of “Okay, these “episodes, these seizure episodes, now that you know what they are, how long have they been happening with you?”. And for some people, it was, you know “I had two and then I got diagnosed” or “I went to the emergency room.” or whatever. But we found that for about half of the people that we enrolled, these events had been going on for a really long time. You know, and so we started to be fascinated by why is it taking so long for people to realise that they have a seizure disorder? And here's it. Here's something that, really, like, blew the tops of our heads off. So 5%, 5% of our people had had a car accident - at least 1 - during a seizure before they got diagnosed. And you would think that, you know, that car accident would have led to a diagnosis, but even then, the majority of those car accidents did not lead to them getting a diagnosis.08:42 Torie Robinson
Do you know why that is?08:43 Jacqueline French
I think I know! I know some of the reasons. And I think that there are two things that I wanna sort of focus on. Number 1 is that: the community really doesn't know anything about seizures. And so, what I say is that most people, when they think of a seizure, they think of the television seizure. The television seizure is: fall on the ground, froth at the mouth, shake all over. You know, you've seen it on ER, you've seen it on all of those medical shows! But the other types of seizures that, you know, you have a momentary lapse in thought processes or just a sensation. We actually came up with a name, the 5 Ss, to try and educate people. Short, Sudden, [sometimes] Strange, Similar, Spells.09:43 Torie Robinson
Oh, I like it!09:44 Jacqueline French
Because, you know, that's what it feels like. It can be anything! It can be anything! So we used a structured interview to get every, you know, sort of detail about people's seizures and what they experienced. And when you go through those descriptions, you know, you’re kind of like “That can be a seizure and that can be a seizure…”, you know, including 1 of my favourites: a young man who for two years every day was having a feeling like he heard all music at once.10:17 Torie Robinson
Oh gosh! I haven't heard [of] that before!10:19 Jacqueline French
And he did that, repeated, like, every day for two years, and like he would… when it was happening, he realised that he couldn't hear his friends talking, like, the talking sort-of became sort of unintelligible to him (you know, he couldn't understand it). It would last about 30 seconds. And yes, he was curious about what it was. But seizures never came to his mind until he had a tonic-clonic or convulsvive seizure. And even then, when he had that and he went to the emergency room, people didn't put 2 and 2 together, even though he had had one of those music experiences right before he had his convulsive seizure! He didn't put it together and neither did the emergency room and they...they said what often gets said by the emergency room, which is “Everybody gets 1 seizure for free.”.11:23 Torie Robinson
Oh god, what the…!11:25 Jacqueline French
I know it sounds amazing, but what that means is that most of, most of the medical community thinks that 1 seizure you don't treat, you need 2 seizures to show that it's an ongoing condition. And so, since they didn't put those things together, they thought “Okay, 1 seizure, we're gonna wait until he has a second one!”. Well, that didn't take very long. So, in retrospect, you know, he'll sit there and go “I don't understand why I wasn't putting that together. I don't understand it. It's so obvious now!” but it wasn't obviously to him at the time. So, and we actually brought him into the Epilepsy Monitoring Unit and we captured one of the music spells and of course it was a seizure (which we were pretty sure it was going to be). So, and by the way, his father was a neurologist, which makes it even more ironic!12:23 Torie Robinson
No! Oh, my goodness!12:27 Jacqueline French
So, that just goes to show that, you know, like, even a neurologist didn't ask his son “Okay, did you have any smaller spells?”, which is such a common thing, right! Which is such a common thing. Even people who are treated for the major convulsive episodes for some period of time, don't understand that these smaller episodes are also their seizures.12:51 Torie Robinson
And can be, you know, from different perspectives, equally impactful or more impactful on people's lives, especially if you have more of them and people don't notice or, you know, it affects your concentration, your cognitive abilities, or in my case, I walked off a railway platform, you know, so many things!13:10 Jacqueline French
And the car accidents! I mean, the smaller spells are what's causing the car accidents. One woman had 3 before she got diagnosed. 3 car accidents, not 3 seizures, but 3 car accidents. So, you know, it's… so, it's very clear that we need to do a better job of educating the general population about what a seizure could be. Because, you know, like, sometimes, if you can imagine, this went on for a decade before people… it was like, the pattern we were seeing is “If you don't have a major motor seizure, you're not going to get diagnosed.”13:52 Torie Robinson
huge thanks to Jackie! You can find links to Jacqueline and her work at the Epilepsy Study Consortium, the Human Epilepsy Project, and the Epilepsy Foundation via the website.
If you’ve enjoyed this episode and would like to help us spread awareness and understanding of the epilepsies around the world, please do consider liking this episode and subscribing to the channel. It means a lot when it comes to raising awareness and understanding of the epilepsies. Thank you in advance! -
00:00 Intro
00:43 Meet Jacqueline French
01:54 Epilepsy Foundation Research roundtable for therapies & devices
03:42 Human Epilepsy Project: 450 people!
07:17 Car accidents before diagnoses!
08:54 Community ignorance re the epilepsies & the 5 Ss: Short. Sudden. Strange. Similar. Spells.
10:06 A musical seizure!
13:52 Conclusion & thanks
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Jacqueline French is a professor of Neurology in the Comprehensive Epilepsy Center at NYU Langone School of Medicine and Founder/Director of the Epilepsy Study Consortium, an academic group that has performed a number of early phase clinical trials in epilepsy, and has developed new methodologies for epilepsy trials. Jacqueline trained in Neurology at Mount Sinai Hospital in New York and did her fellowship training in EEG and epilepsy at Mount Sinai Hospital and Yale University.
Jacqueline has focused her research efforts on the development of new therapeutics for epilepsy, and new methodologies for clinical trials. Over the past 20 years she has served as the Principle investigator on a number of trials for new epilepsy drugs. She is responsible for the creation of a number of new trial designs that have been accepted by regulatory authorities for new drug approval. Jacqueline has been active in creating guidelines for the American Academy of Neurology and the International League Against Epilepsy. She chaired an AAN/AES committee that produced two widely quoted guidelines on the use of new antiepileptic drugs. She has served as chair of the International League Against Epilepsy North American Regional Commission, and Commission on Therapeutic strategies. Jacqueline serves as the Chief Medical/Innovation Officer of the Epilepsy Foundation. She is the past president of the American Epilepsy Society. She is the past Secretary of the American Society of Experimental Neurotherapeutics. She is the recipient of the American Epilepsy Society Lennox Award (2017) and Service Award (2005), the Epilepsy Foundation Hero award (2013), and is an ILAE Ambassador for Epilepsy. She has authored over 450 articles and chapters, is the editor of multiple books, and lectures internationally on clinical trials and the use of anti-seizure medications. -
LinkedIn: jacqueline-french
Epilepsy Foundation: dr-jacqueline-french
NYU Langone Health: jacqueline-a-french
Human Epilepsy Project: humanepilepsyproject.org/research-team
The Epilepsy Study Consortium: epilepsyconsortium.org
ResearchGate: Jacqueline-French