Mistaking Epilepsy For Menopause?! - Jacqueline French, NYU Langone Comprehensive Epilepsy Center, USA
It's wild: when clinicians mistake an epilepsy (caused by a brain tumour!) for menopause! Or, when a parent doesn't believe that their daughter could have an epilepsy...! Why aren't organisations and governments promoting epilepsy awareness as well as they do stroke and MS?! Tune in to hear all about it from leading epilepsy specialist: Jacqueline French.
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Jacqueline French
”And her mother said “How dare you, like say that you have a medical condition, these poor people who have epilepsy, and you're using that not to go to school!”00:11 Torie Robinson
Oh my god!00:12 Jacqueline French
And then of course she had a convulsive seizure…! “00:14 Torie Robinson
Fellow homo sapiens! Welcome to, or welcome back to Epilepsy Sparks Insights.
There are some wild stories to be heard from our podcast star, epilepsy specialist neurologist Jacqueline French who this week (in part 2 of 2) tells us more about the Human Epilepsy Project, where, for instance, she discovered that a woman was misdiagnosed with having menopausal symptoms “only” - and it turned out to be a Brain Tumour Related Epilepsy! Stay with us to learn more!00:45 Jacqueline French
I am an epilepsy specialist. I work in New York at NYU (New York University Hospital), and I also run a non-profit called the Epilepsy Study Consortium, 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.01:08 Torie Robinson
And do you see, or have you noticed, like, disparities between different parts of countries? And people from different socioeconomic backgrounds yet?01:18 Jacqueline French
I'm sure that they exist. We have not looked at it, you know, in terms of delay of diagnosis in our study. We did look at some other types of disparities, but that one we haven't looked at, but it would be very interesting to look, right? Because I think it would probably take even longer.01:36 Torie Robinson
Yeah…01:37 Jacqueline French
But it can take very long, even in high-income countries where people are getting the best of care. You know, I heard a story - you will… your mouth will drop open(!) - but this is a woman who currently is on the board of the Epilepsy Foundation (so very plugged in). But when she started having seizures, she was having little myoclonic jerks with her type of seizures - you know, little body jerks - when she was a teenager. And they would happen a lot when she would wake up in the morning, which is very common for the kind of epilepsy she has. And so, it would take her a long time to get out of bed in the morning. And her mother said, you know “You lazy thing, get out of bed! You have to go to school!”. And her mother was very upset with her! And this was going on for a long period of time. She took it upon herself (because she is a very smart young lady) to start looking on the internet because she was sure that there was something wrong with her! And she came back to her mother and said, you know “I've been looking on the internet and I'm wondering whether these things are seizures.”.01:47 Torie Robinson
Wow.01:49 Jacqueline French
And her mother said “How dare you, like, say that you have a medical condition, these poor people who have epilepsy, and you're using that not to go to school!”.03:00 Torie Robinson
Oh my, oh my god, oh my god, oh my god! And then what happened?03:04 Jacqueline French
And then of course she had a convulsive seizure, and her mother probably has never forgiven herself!03:10 Torie Robinson
Do you know what? I've got something to compare that with. So, I was having, like, seizures for, well possibly since I was a baby, we don't know, but I was diagnosed as a child. I found out a member of my family didn't believe I had seizures until I was 31, 32 (until he saw me have a tonic-clonic). Oh, and he literally said, ‘cause I don't remember much about that, but I do remember him saying “Oh, I believe you have it now.”. Thanks mate. Cheers dude. You know, it's just… because yeah, and it's shocking. I bet this is way more common than people realise.03:43 Jacqueline French
Absolutely. I mean, our study shows it's very, very common. And it's mistaken for so many different things. I mean, I can tell you story, after story, after story where people, you know, are mistaken for having anxiety because they have, like, a panic-feeling associated with their seizure, or some other psychiatric issue going on. I had a patient (she wasn't in our study), but I had a patient in the past who was having “spells” [seizures] and was told that (you know, she was like a 50-year-old woman), so, she was told that this was menopause.04:16 Torie Robinson
Oh god, oh god!04:17 Jacqueline French
And then when she started to urinate on herself, she was told that she was having bladder issues due to menopause and was sent to a urologist.04:28 Torie Robinson
It's just...04:29 Jacqueline French
And finally, when the diagnosis was made, sadly, she had a brain tumour and that's what was causing it.04:35 Torie Robinson
Yeah, sometimes you just get left speechless. It's just... Sometimes, I wonder how much of this is down to individuals and families being in denial “ I don't want to think about that”. Or how much is down to just outright ignorance,,,04:50 Jacqueline French
If you ask people what a seizure is they just are not aware that these smaller episodes can be seizures. I mean, it's just not something that people are aware of, so I mean I don't blame them for not realising it. We have to do a better job. I think that, that the, you know, the onus is on us to do a better job of spreading the word.05:14 Torie Robinson
Yeah, I agree. And things like, well, you know, we've recently had International Rare Disease Day. And actually, lots of people don't realise that many epilepsies are actually rare diseases, right? So, there’s that, and then we’ve got Purple Day, and so many things. Do you see these as opportunities for us to, kind of, reach out to the general public and families in a more sort of positive, constructive manner rather than having a pity party?05:40 Jacqueline French
Wouldn't it be great if, you know, television shows started to not focus on the convulsive seizures, but show people that we're having other kinds of seizures as well? And I always say, you know, like, I don't know how it is in the UK, but in the United States we have commercials for Multiple Sclerosis drugs, commercials for Parkinson's drugs, commercials for Alzheimer's drugs. I have not seen one commercial for a seizure drug! And I don't know why that is!06:14 Torie Robinson
I was talking to somebody else the other day, how great the marketing has been for different cancers, how great it has been for MS, how great it has been for all these different diseases. But epilepsy, like…despite the epilepsy being so directly related to many other diseases, right? It's absolutely crazy. I did a post recently saying that, you know, people, for instance, with HIV will often develop epilepsy and people go, no, no, well, mate, if it goes to your brain, you know (!), or, all these different things… or dementia and the relation there. And so, I mean, I don't know about you, but I would love it if we could have organisations who, say, you have an Alzheimer's specialist or something like that - they would be also talking about the impact of developing seizures and epilepsy because it's a huge part of the “lovely package” of this disease, right?07:11 Jacqueline French
Yes. And you know, 1 in 26, I think, 1 in 26 [people will develop an epilepsy at some point]! So, I mean, you know, we always talk about the fact that, you know, on every school bus of children, there's gonna be 1 that develops epilepsy in their lifetime. That's, I mean, that is… and we also talk about the fact that it is more common than many of the diseases that people are much more aware of. Multiple Sclerosis, Parkinson's Disease…you know, it's 10 times more common than Multiple Sclerosis, but it seems like people have heard of that much more. And you know, part of that is because, you know, people with epilepsy can hide their condition and they usually do if they can. It's a question of making sure that, you know, people are aware. You know, in stroke in the United States, the National Institutes of Health waged a campaign for people to understand the symptoms of the beginning of a stroke. It was called FAST [(Facial weakness, Arm weakness, Slurred speech, and Time]). I think. They had a campaign and you could see, you know, billboards that would tell you, you know “This is the signs of a stroke.”08:24 Torie Robinson
There has been a relatively recent Irish TV series (it's really good and I'll put a link to it [below]). But basically, one of the main characters, they're a really dodgy family, basically like the mob of Ireland doing drugs and stuff. It's all fictional (as far as I'm aware!). And anyway, one of the main characters develops epilepsy and he's having focal seizures at first. And then he does, he goes to secondary generalised, and he has tonic-clonic. I tell you what, it's the best I have seen when it comes to focal seizures. Because like you were saying, you never see that on the TV or in the movies or anything. It's actually a good series apart from that as well.09:03 Jacqueline French
That's fantastic. So, we need more of that. And I bet that the person who did that (who made sure that that was in there), is somebody who has experienced it or has a loved one who experienced it. And good on them. Good on them.09:18 Torie Robinson
Ooo, it's called “Kin”, that's it. I've just remembered KIN as in yeah, family. So, check it out.
And so, if anybody wants to learn more about you, I mean, you just type in the name everyone that we have, they're one of the most famous people here(!), but the work that you're currently doing and you want people to look at, where should they go for that?09:34 Jacqueline French
Well, for the Epilepsy Study Consortium, you can just plug that in “Epilepsy Study Consortium”. For the Human Epilepsy Project, we have a website for that. So just type in “Human Epilepsy Project”. And the Epilepsy Foundation in the United States, there is a website for that. In fact, we have one of the most looked at websites for epilepsy, which is “epilepsy.com”.10:00 Torie Robinson
A 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 haven’t already, don’t forget to like, comment, and subscribe, and see you next time! -
00:00 Clip and intro
00:45 Meet Jacqueline French
01:08 Disparities in epilepsy diagnoses and care
01:44 When your family don't believe you have epilepsy!
03:43 When a woman was misdiagnosed with menopause!
04:50 Not blaming people for not being aware of epilepsy
05:40 Media responsibility to educate about epilepsy
06:14 Why aren't companies openly marketing epilepsy treatments?
07:11 Epilepsy is 10 times more common than Multiple Sclerosis!
08:24 Great Irish TV series showing epileptic seizures: Kin!
09:24 Check out Jacqueline online!
10:00 Conclusion and 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