Susannah Cahalan on Anti-NMDA Encephalitis and Her Journey to Diagnosis

Episode Transcript

Dr. Correa:
Saludos and hello. I'm Daniel Correa.

Dr. Nath:
I'm Audrey Nath.

Dr. Correa:
We're two neurologists and fellow brain geeks hosting the Brain & Life Podcast. This show, the Brain & Life magazine, and website are all brought to you by the American Academy of Neurology.

Dr. Nath:
We're so glad you're joining us. We'll be here each week for conversations and interviews with community members, celebrities, and experts on brain health and living with neurologic conditions. Now, let's get to today's show.

Dr. Nath:
Daniel, I want to know what were you doing when you were 24 years old? 24.

Dr. Correa:
What was I doing at 24? 24. Oh, wow, 24, I was actually at Howard University College of Medicine. I was struggling, staying up, studying for tests, getting some time in the hospital, drinking way too much coffee and just waiting for the weekends because the weekends... I chose to specifically do med school near where my family lived, so on the weekends, my mom was so nice, she would come up to DC. She would cook for me, often take me out to dinner also, and then help me get my life together and wash my clothes.

Dr. Nath:
Wow. That was so specific. I thought you were going to look forward to the weekend for a different reason. I did not see that coming. Shout out to Daniel's mom.

Dr. Correa:
Yeah, no, no, no.

Dr. Nath:
When I was 24, I was also in med school at UT Houston, and that was in town where my parents were as well, and so same deal. They cooked for me a lot too. I just remember myself being a kid when I was 24.

Dr. Nath:
Our guest today, Susannah Cahalan, and well, back when she was 24 years old, she was a journalist. She was writing, she was on the up and up. And then suddenly she started to have these really weird symptoms. She was hallucinating. She talks about having corrupted thoughts. Then she started having these weird mouth movements, and seizures, which is all super strange for a healthy person. At first, no one could figure out what was wrong, including doctors, including neurologists. And it seemed maybe she had some sort of psychiatric disorder, and people wondered if she had a substance abuse problem. As it turns out, she was one of the first people in the entire world to be diagnosed with a condition that had just been discovered two years prior.

Dr. Correa:
Wow, so she had NMDA encephalitis?

Dr. Nath:
That's right.

Dr. Correa:
Wow. That was so early on in this condition and diagnosis and what we know about it today. It's a condition where the body attacks the brain. Your immune system that finds infection and different things actually sends signals and attacks the tissue of the brain. It's an autoimmune condition. That's what that term basically means. Very similarly to how your body would respond to infections or sometimes even cancers or other foreign objects. The body starts to react to your nerve cells as if it's one of these conditions.

Dr. Nath:
Absolutely. We hear about autoimmune conditions with other parts of the body. People may have heard of rheumatoid arthritis, things that attack the joints. What's interesting is when you have an autoimmune disorder that affects the brain, the symptoms can get very interesting and very odd, very quickly. So they can be hallucinations and weird movements. The best news is that because this disorder had been discovered two years before her symptoms started, she was able to get treatment, and she fully recovered, and she was able to write the best selling book, Brain On Fire, about her experience. Oh, that book's been made into a movie. She is alive and well and able to tell us her story.

Dr. Correa:
It's amazing her ability to actually then also get a chance to reflect and recall that experience for all of us. In addition to speaking with Susannah Cahalan, you also got a chance to catch up with the researcher who discovered the disease. It's so amazing.

Dr. Nath:
Seriously, neurology royalty. I was pinching myself. The researcher is Joseph Dalmau, and he's also a neurologist. He talks to us about the serendipity and luck, and also how an eye for patterns led to the discovery of NMDA encephalitis.

Dr. Correa:
Wow. I can't wait to listen to it and get to hear what our listeners think about this episode.

Dr. Nath:
Absolutely. Let us know.

Dr. Nath:
We are so honored to have Susannah Cahalan with us today. She is a journalist, New York Times number one bestselling author, public speaker, winner of the 2022 American Brain Foundation Ambassador Award for elevating public awareness of neuro-inflammation, brain disease, the need for research, and the patient experience, and overall force to be reckoned with.

Dr. Nath:
Her 2012 memoir, Brain On Fire, has sold over a million copies and was made into a movie. In the book, she recounts how she was a 24 year old who was healthy, and then had new onset of neurological and psychiatric symptoms and how incredibly not obvious her diagnosis was. She was the 217th person to be diagnosed with NMDA receptor encephalitis, which, briefly, is a disorder where the body attacks the brain. Her experience of having psychotic symptoms and initially being misdiagnosed with a psychiatric illness then led her to investigate more about this issue and how many other people out there have been in similar experiences.

Dr. Nath:
In her second book, The Great Pretender: The Undercover Mission That Changed Our Understanding of Madness, she explored some of the darker history of psychiatry in the 19th and 20th centuries.

Dr. Nath:
My little summary is not doing any of this justice, so today we will be speaking to Susannah Cahalan herself to hear her in her own words. Welcome to the podcast.

Susannah Cahalan:
Thank you so much for having me, Dr. Nath. It's a pleasure to be here.

Dr. Nath:
I know there's some listeners who might not know your story. For those who are not familiar, I'm going to recap just a little bit. This all happened back in 2009. You were 24, and you were fine. You're a writer, and a journalist. Then you start to have sudden onset of symptoms, which now we know are super classic for autoimmune encephalitis. I saw you described having odd biting movements and mouth movements, we call those oral automatisms, and you had sudden onset of seizures, which now we refer to as an explosive onset of seizures. Your experience with this, how did it drive you to explore not only what's happening with people now and talking to people now, but to explore history of medicine?

Susannah Cahalan:
Yeah, I mean, I think having gone through psychosis, which is a very unsettling experience to say the least, and it also raises lots of questions about consciousness and selfhood and all these really deep, fundamental questions in philosophy and medicine. Having undergone that, and I also just lost a lot of memory during the time that I was sick. I really was left with this lacking, especially right before writing Brain On Fire. I just didn't know what had happened, literally, during a time it was completely lost. There was this compulsion to reclaim some of that time. Then when I did a little bit of that in an article that predates the post, I did that first, and the response from the community at large, I mean internationally, was overwhelming. I mean, people all around the world reached out to me, either they got a diagnosis because of just that article, or they were looking for a diagnosis, or they were in pain and suffering, and they couldn't find a diagnosis or someone to help them. That resulted in Brain On Fire. Out of that experience, I got a new level of interaction with the general population.

Dr. Nath:
Oh, I can imagine.

Susannah Cahalan:
Some of the population that were reaching out to me in the years after Brain On Fire were not just people who suspected they had autoimmune encephalitis, but were people contending with psychiatry, and who are feeling lost and hopeless in some cases, and also feeling a divide between "organic illnesses" like mine, and psychiatric illnesses, maybe their sons, for example. They felt a little bit of a anger and a little bit of confusion about why they were treated differently than I was. Those questions motivated my second book, to go back into history.

Dr. Nath:
It's fascinating to me... I guess this was back in 2012, excuse me, 2009. I feel like by the time I started residency in 2012, these things were pretty well known, and we would have patients with new onset psychosis and be getting cerebral spinal fluid to look for autoimmune encephalitis. I think you talking about this, and I remember you talking about this at the time when I was in grad school, has raised some awareness.

Dr. Nath:
You were misdiagnosed with schizophrenia, you were misdiagnosed... I think I read somewhere that a neurologist told you had alcohol withdrawal, but you weren't even a drinker. I can't even imagine. I feel angry for you.

Susannah Cahalan:
There was this lack of curiosity on the part of the physician who was handling my case, which was astounding from the patient perspective.

Dr. Nath:
I bet.

Susannah Cahalan:
I never had interfaced with medicine in a way that...

Susannah Cahalan:
...I could even imagine something like that happening, and later I interviewed the doctor, and the notes that he took were incorrect. So, he had asked me, "How much are you drinking a day?" I was 24 at the time. I said, "About, I'd say, two glasses of wine a night," something like that, and he had actually written down two bottles of wine per night.

Dr. Nath:
Oh, dear.

Susannah Cahalan:
So, that very much changed the way that he saw me, and then had changed initially the way, when I was initially admitted to a hospital, how I was seen there. I mean, obviously, when toxicology reports came back...

Dr. Nath:
Of course.

Susannah Cahalan:
But there was still a judgment, maybe, about my character, and its role in my illness at that point.

Dr. Nath:
Oh, wow. Yeah. It's so true that it's something we do have to fight against. It can be awfully tempting to anchor in one more obvious idea, and to the point that it could even change how you hear things. You may have been looking so strongly for that... You may have even perceived that differently, which is an interesting top-down phenomenon, we would say in neuroscience. It's really interesting. Thinking back on the history of psychiatry and neurology, and it was all one specialty, that's how it all started.

Susannah Cahalan:
Yes.

Dr. Nath:
Sigmund Freud was a neurologist, and you think back on the gender views that could affect these things, how there used to be this idea of hysteria, which was pretty much any symptom that a woman could have that made her difficult to deal with, inclusive of psychosis, inclusive of all kinds of things. And thinking back, historically, some number of these women were treated by having their ovaries removed. But it turns out with autoimmune encephalitis, some people have a mass on the ovary called a teratoma, which actually can contribute to the production of antibodies that affects the brain. So, it's just wild to me that maybe somehow, they actually were accidentally treating autoimmune encephalitis by complete accident, but it really makes me think about just the way that women are viewed in particular in medicine, and I'm just curious if you ran across gender bias in what you've investigated as well.

Susannah Cahalan:
I mean, it's fascinating that some of these ovaries are removed, and the things that's interesting is for a while, and apparently right now, I'm in the midst of writing a new chapter for the 10th anniversary. It's the 10th anniversary of the book coming up in November, which is wild to think about.

Dr. Nath:
Oh, wow. Yeah.

Susannah Cahalan:
So, I'm contributing a new chapter, and I've been talking to some of the leaders in the field about what's going on with research today, and it's been fascinating to see how far we've come since I was diagnosed, and how far we still haven't. For example, in the beginning we were removing ovaries left and right. Women were getting their ovaries removed and didn't have a teratoma, and I remember I...

Dr. Nath:
Oh, wow.

Susannah Cahalan:
... reported this because I interviewed my dad. In the very beginning stages of my diagnosis, a group of doctors, some of them were students, had come into the room, and they were openly discussing the removal of my ovaries without...

Dr. Nath:
Oh, boy.

Susannah Cahalan:
... having ever told me about this before, and my dad got really, really angry and kicked them out of the room. But I have subsequently talked to a few women who have had their ovaries removed during this time, and most of them see it as... I think they view it as a necessary act. I think now, most physicians would not go that far, though there are still stories of that happening. And just the other day, talking to one of these doctors, they told me that they still have to really fight against this push to remove, which is... I mean, it's terrifying, and to some degree I understand it because the illness is so frightening, and as you said, they use the word explosive. You want to stop this as quickly as possible, but this quick urge to just remove the ovaries without really being circumspect about that, I don't know if that's a bias ingrained there, but it's definitely something that I feel... I try to think about a corollary with a man. Would there be as quick of a push?

Dr. Nath:
Yeah.

Susannah Cahalan:
I don't know. I mean, it's just a question to ask.

Dr. Nath:
I mean, they do screen in men for teratomas as well, but it's just interesting to me or a little scary to me that there is this history where the removal of ovaries had nothing to do with teratomas at one point, which is kind of terrifying. As part of your presenting symptoms, you had big seizures, and as an epileptologist, I'm kind of curious, as somebody who was healthy and then started having seizures, what did you think was happening?

Susannah Cahalan:
That's really interesting. The problem with my recollection of that time is it's so shaped by my writing about it, so I have a lot of false memories about that time. I will say that I remember certain things. I had an out-of-body experience at one point where I saw myself. No one else could tell me this, so I know it's real. I remember it. That's not something that I could've really communicated to someone else at the time, but I had that feeling of watching myself going into an ambulance, being outside of myself.

Dr. Nath:
Yeah. That can be a symptom of the...

Susannah Cahalan:
Nice.

Dr. Nath:
...mesiotemporal seizures, actually. Yeah.

Susannah Cahalan:
Is it?

Dr. Nath:
Yeah, yeah. It can be. Oh, that's interesting.

Susannah Cahalan:
Yeah.

Dr. Nath:
So, you actually remember that.

Susannah Cahalan:
I had that experience. I mean, most of what I recall is just confusion, confusion, being exhausted, really feeling vulnerable, and that kind of extreme vulnerability is very frightening, and the lost time too. I mean, you lose time during a seizure. At least, I did.

Dr. Nath:
It's interesting reading about what you experienced then. You do refer to other people's notes sometimes, I think probably for that reason.

Susannah Cahalan:
Yeah.

Dr. Nath:
I think you refer to your dad's diary. I thought this was kind of funny, if it's okay for me to read.

Susannah Cahalan:
No, of course. Of course.

Dr. Nath:
Basically, that your dad wrote in his diary, "I went over to her on the bed and I hugged her, and I began to cry, and next thing I knew, Susannah was laughing. I asked why. She told me it's the first time she'd ever seen me cry. I must have looked pathetic." So, you don't even remember saying this to your dad, I guess. Right? It's funny.

Susannah Cahalan:
Yeah. It is. I mean, that's the thing, is in this situation, and I think even in very dire times, there are moments of humor. I mean, I had very bizarre experiences, and not all completely negative. One of my hallucinations was that I could age people with my mind, so I could-

Dr. Nath:
Whoa.

Susannah Cahalan:
Yeah. So, I could actually-

Dr. Nath:
I haven't heard that before.

Susannah Cahalan:
I think that one might be unique to me, so it's mine.

Dr. Nath:
Wow.

Susannah Cahalan:
But I could literally look at someone and age them, and it was a very powerful feeling embedded in that. I think that's true universally, from what I understand of people who have gone through this. When you're dealing with this kind of psychosis, it's oftentimes so bizarre that sometimes it's funny.

Dr. Nath:
So, this was many years ago, 2009, and now it's 2022, and you were treated, thankfully. Do you ever doubt your thoughts now? I don't know if that's a strange thing to ask, or have a sense that your thoughts can be corrupted, I guess, even to this day, or has that passed and you don't think about it much anymore?

Susannah Cahalan:
That's a really good question, and I think no, I don't think about it every day anymore. There are moments I would say when... The continuum of sanity versus insanity is one that we cross constantly, whether we're talking about depression or anxiety. We go on the abnormal side of that line throughout a day, and so there are times when maybe I'm more on one side or the other and feel like, am I losing control of myself here? Because I've felt what it's like to lose the reins, to not have control over your mind, and it's terrifying. That's another thing that I think with time I've become more secure and comfortable.

Susannah Cahalan:
Talking to people who have been recently diagnosed, it's not there yet, and it can be a time of high anxiety. And that's something that I've been really passionate about talking about, is in that recovery, you get the diagnosis, you get the treatment, there's a good prognosis, 80% have a good recovery, whatever good means. But in that immediate recovery time, or even in the longer term, anxiety and depression, it really ramps up because having lost your faculties of reason and sanity, that's not something you just snap back to recovery with. It takes time, definitely.

Dr. Nath:
In addition to the actual effects on your brain. So, there's that too. Even just among epilepsy patients there are higher rates of depression, so there's something about the firing not going right that we can't even pretend to completely understand.

Susannah Cahalan:
Absolutely.

Dr. Nath:
We pretend sometimes. We really don't know. In the book you talk about, well, data gathering and science, and how bias can end up... I don't want to give away your book because... But bias can enter in at every stage of science and medicine, and how we just all need to be aware of it, and just waking up and thinking about that every day.

Susannah Cahalan:
Implicit and explicit, right?

Dr. Nath:
Yes.

Susannah Cahalan:
I mean, sometimes the bias is more straightforward than other times, but-

Dr. Nath:
Exactly.

Susannah Cahalan:
Yeah, no, and I think it's helpful to keep in mind that sometimes when we go back to well held notions, they don't stand up to scrutiny, and it's just important to scrutinize.

Dr. Nath:
So before I let you go, I think people are going to want to know what you're writing and what you're working on and other movies that are made about you. Where can people... You never know. Hey, it can happen. It happened once.

Susannah Cahalan:
This is the last movie made about me, okay? No more strange things happening, please. I'm knocking on wood.

Dr. Nath:
Fair enough. Where can people follow you?

Susannah Cahalan:
I'm working on a new book. This is a kind of step away. I feel like each one has been a little step further away. This one's actually about psychedelics, and it's not about anything about me. But yes, it's fun because it's...

Dr. Nath:
Yeah.

Susannah Cahalan:
...This is an interesting moment that I think we need to be very circumspect about. And I think careful. And I think there's a lot of magical language around the use of psychedelics.

Dr. Nath:
Yep.

Susannah Cahalan:
But I am kind of... It will be a biography of this unknown woman in the history of psychedelics, and I'm using her as a way of talking about some of the potentials and pitfalls as we move into this future of legalization, most likely, and legalized kind of clinical use. So it's a really fun one.

Dr. Nath:
Well, congrats on that. Thank you. We will be looking out for it. Please come back and join us again sometime.

Susannah Cahalan:
Oh, I would love to. What a joy. Thank you for such insightful, very meaningful questions, I have to say thank you for that.

Dr. Nath:
You have a fascinating story. I know you don't want a neurologist to think you're interesting.

Susannah Cahalan:
I know.

Dr. Nath:
But it is what it is. It happened.

Susannah Cahalan:
Yes. I'm embracing it. I'm an interesting patient, what can I say?

Dr. Correa:
Audrey, that was such a great discussion with Susannah.

Dr. Nath:
It's so much fun talking to her. What a cool lady.

Dr. Correa:
I'm so glad that she got the treatment, and she's doing so much better. And then now she can have that opportunity to reflect and really share with us. Such a clear perspective of what it is going through that condition.

Dr. Nath:
I think it really helps that she is a super good writer to begin with.

Dr. Correa:
Totally.

Dr. Nath:
And so her thoughts are very clear, and it's incredible she's able to share the story.

Dr. Correa:
Now, Audrey, in her book, she mentions Dr. Josep Dalmau, and you're going to be talking with him. So how is he related to her story, because it's not just that he's the medical expert?

Dr. Nath:
Well, Dr. Josep Dalmau is the neurologist and scientist who discovered NMDA Encephalitis in 2007, two years before Susannah started having her bizarre symptoms, and I get to talk to him today about how knowledge and luck came together perfectly in order to discover this diagnosis.

Dr. Nath:
To learn more about an NMDA Receptor Encephalitis, we caught up with Josep Dalmau, MD, PhD, who, along with his colleagues, first identified anti-NMDA Receptor Encephalitis back in 2007. This was two years before Susannah Cahalan was struck by the disease in 2009. Dr. Dalmau is a neuro-oncologist with a research focus on autoimmune encephalitis and paraneoplastic neurological disorders. He's a Research Professor at the Catalan Institute for Research and Advanced Studies at the University of Barcelona, Adjunct Professor of Neurology at University of Pennsylvania, and a guest researcher at the NIH.

Dr. Nath:
Since that time, Dr. Dalmau has also identified several other autoimmune brain diseases. He is a world authority on autoimmune and paraneoplastic disorders, and to this end, he has founded the center of autoimmune neurology at UPENN to continue the research and care of these patients with these diseases. In addition to all of that, he is a member of the National Academy of Medicine, an Editor of the Journal "Neurology, Neuroimmunology, and Neuroinflammation," and within the American Academy of Neurology, he serves as Chair of the Autoimmune Neurology section, and received the AAN 2016 Cotzias Award.

Dr. Nath:
Back when I was in residency at Boston Children's Hospital, we often referred to Dr. Dalmau's papers when we were identifying patients in the hospital that could have autoimmune encephalitis. So on behalf of all of us at Brandon Life, Dr. Dalmau, it is an honor to be speaking with you today on the podcast. Welcome.

Dr. Dalmau:
Well, thank you. Likewise, I would like to thank you very much for inviting me.

Dr. Nath:
For our listeners, can you tell us back in 2007 and before that, how did the discovery of NMDA Encephalitis come about?

Dr. Dalmau:
Well, yes, that's always a product of serendipity and a little bit of effort to try...

Dr. Nath:
Sure.

Dr. Dalmau:
...To try to find out what a patient may have. So it turned out that we had a patient that had this disease, we didn't know about this disease, and had been for several months admitted to the hospital. We didn't have an idea what this patient had.

Dr. Nath:
I'm going to take a moment to give you a little background here. So this patient of Dr. Dalmau's had many symptoms of what we now know is autoimmune encephalitis, which hadn't been recognized yet. But he and his team had a suspicion that this was some sort of autoimmune process, where the body makes antibodies that attacks the patient's brain. So they tested out their theory on this patient by giving the patient an immunosuppressant medication, IV steroids, and amazingly the patient got better. Their hunch was right. Okay, let's jump back in.

Dr. Dalmau:
But at some point the patient improved with empiric, so with we guessed that the disease had to be autoimmune, and we used immune therapy, very simple immune therapy, when she started to improve. But the most important thing was that the clinical picture of this patient was very different from other types of autoimmune encephalitis or other types of diseases that, until then, had been characterized. So it was very peculiar, very different, very striking because the patient was very sick and had prominent psychiatric and... A mix of psychiatric and neurological problems. And we had seen three other... We, actually more than seen, is that I heard of three other of patients that people consulted me that had identical symptoms.

Dr. Nath:
Oh wow. And even at that time?

Dr. Dalmau:
And everything worse. And so, yeah. So then the patient that we had at Penn, and three other patients, and all basically had the same copycat clinical picture. Exactly the same. So this led us to even excite more, to find out what these patients had. And so this was the beginning, right? And then we identify the antibodies, the antibodies help us to develop a test, then the tests help us to identify more patients with the same syndrome or the same disease, and this refined the knowledge of this disease, and this is how all it started.

Dr. Nath:
I'm curious because now, based on this work, we have autoimmune encephalitis on our differential diagnosis with explosive onsets of seizures and new onset psychosis. I'm curious, at that time, I just would like to know what made you think that the first patient had an autoimmune component to their disease? Was there something in their blood labs? Or was there something in testing of the cerebral spinal fluid that tipped you off?

Dr. Dalmau:
Yes. Well, there were several things also. One is that basically when we saw the patient, the patient was not in neurology, it was in the intensive care unit. And many, many physicians saw the patient. And during the consultations over many weeks. So there were a number of neurologists that went to see the patient, some point I saw the patient also, and none of us had an idea what she had. But, as I mentioned before, the whole clinical picture led us, by exclusion of many other things that could be involved, and at the same time, by the inclusion of some findings in the patient. Like, for example, the patient had some inflammatory, abnormal... Some inflammatory findings in the spinal fluid. For example, the patient had a small tumor in the ovary that was benign, and we didn't pay too much attention, but everything added, because the other three patients that I mentioned before, were exactly similar and all three had these tiny, small little tumors.

Dr. Dalmau:
So all of these led us to believe that the tumor was involved and that probably, there was an immune reaction against the brain initiated by this tiny tumor. And so all of these led us to believe that this was an immune-mediated process, particularly considering that we had a lot of experience with other types of diseases in that not benign tumors, but malignant tumors triggers other diseases like the perineoplastic syndromes. So it was not one single thing. It was basically the confluence of all these factors that led us to study these patients for an autoimmune response.

Dr. Nath:
That makes sense. I have a question based on that. You were just mentioning that there was a benign tumor in the ovary. Can you tell our audience about the ovarian teratoma, and how did you guys figure out that could be the source of antibodies? Did you guys take a piece of somebody's ovarian teratoma to the lab?

Dr. Dalmau:
Yes. Well, yes, that's a good question. This tumor is a benign tumor. It's called teratoma. And when you examine the tumor, you find that there is nervous tissue there, and that this nervous tissue, this is special tumor that is very different from other tumors in that this one has a mixed up of different types of tissue. And so in a little tumor, you can have a representation of bone tissue, of muscle, of fat. You can have even teeth. You can have a nervous system. And so I'm explaining this for the general audience that may not know about...

Dr. Nath:
Yes, thank you.

Dr. Dalmau:
...this tumor, right? So in the part of nervous system, you find that it contains the NMDA receptors. And we thought that this was the trigger in this particular case.

Dr. Nath:
Since we're getting a little into the weeds here, I'll just briefly explain the connection between ovarian teratomas and autoimmune encephalitis. So teratomas are these masses that can grow on your body, and they can be pretty bizarre looking. They can have actual teeth and hair in them. And the reason is because they come from blurry potent cells, so basically, the kinds of cells that can become different types of tissue. And then they grow out of control and create the actual tissue just in a random, little mass. And these teratomas are often found in the ovaries or the testicles because that's where your body's germ cells are, basically the types of cells that can go and help create another person are there, and the pluripotent cells are there. And then sometimes it goes awry and makes a weird mass of tissue. It's weird. So essentially, these strange balls of tissue can also contain neural tissue. And then your body sometimes sees this neural tissue and might think it's a foreign invader and make antibodies to attack this seemingly foreign neural tissue. Unfortunately, at this point, your body is now pumping out antibodies against neural tissue, including your own brain and nerves. So if your body is creating antibodies that attacks your brain, this can cause autoimmune encephalitis.

Dr. Dalmau:
Then, later on, we saw that the disease also can occur without tumor. So there is a substantial number of patients that they don't have a tumor. And then the question is, what initiates the disease?

Dr. Nath:
You're mentioning that exactly this disease process can attack suddenly, and sometimes we have a idea of what may have caused it. And other times we don't know what triggered it. I'm wondering, do you think that the people who do get NMDA encephalitis have a genetic predisposition to getting autoimmune encephalitis?

Dr. Dalmau:
Well, this is a possibility. However, until now, the study is done to identify some predisposition for autoimmunity, what's called HLA aprotyping or genotyping studies. In this particular disease, in other autoimmune encephalitis, because there are many... In others, yes, but in this particular one, it's not so clear. Okay, there are some hints that this can happen, but considering that actually is a disease with larger number of patients studied, the fact that there are, after all these years, and was the first one to be described... one of the first ones to be described, the fact that after all these years there is difficulty to pinpoint or to confirm that there is genetic background, compared with other diseases that have been discovered later and that we have plenty of evidence that this is the case, it already tells you that it's very uncertain.

Dr. Nath:
We talked some about the genesis of the diagnosis and how you put the patterns together and discovered it and how, initially, in order to stop this autoimmune reaction, you used various kind of, I would say, big gun, autoimmune drugs. What do you see on the horizon or in the future for treatment for these patients? Anything exciting?

Dr. Dalmau:
Yes. And I mean, we can follow a little bit what has happened with diseases that have been more established for a longer time, and you see that there has been an incredible amount of new drugs and new treatments for autoimmune diseases. I mean, this is very different from multiple sclerosis, but it's a little bit more closer to the NMO. And there are already some important trials that have demonstrated the efficacy of several treatments. I think it's an exciting future in terms of projects, and for young investigators, I think is an area that is very attractive.

Dr. Nath:
Absolutely. We've come a long way since Susannah Cahalan was diagnosed and the story she tells in Brain on Fire. So I think on her behalf and on behalf of all the patients, I think they would all thank you for the work that you're doing.

Dr. Dalmau:
Well, thank you very much. Thank you for inviting me and for this interesting interview on comments. So, thank you.

Dr. Correa:
Well, Audrey, you got to hear directly from the researcher himself, Dr. Dalmau, about autoimmune encephalitis and how it's a treatable condition, but only if it's recognized.

Dr. Nath:
Exactly. And now we know how to recognize this condition based on the hard work of many people, including the team of scientists working with Dr. Dalmau.

Dr. Correa:
Thank you all for joining us today, and please tune in again next week. Adios.

Dr. Nath:
Adios.

Dr. Correa:
Thank you for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast, so you don't miss our weekly episode. You can also sign up to receive the Brain and Life magazine for free at brainandlife.org.

Dr. Nath:
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Dr. Correa:
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Dr. Nath:
Special thanks to the Brain and Life team, including-

Dr. Correa:
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Dr. Nath:
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Dr. Correa:
And Andrea Weiss, our Executive Editor for Education and News Publications.

Dr. Nath:
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Dr. Correa:
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Dr. Nath:
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Dr. Correa:
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Susannah Cahalan on Anti-NMDA Encephalitis and Her Journey to Diagnosis

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