NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington. Three million of us live with epilepsy, a complex disorder that kills tens of thousands every year - sometimes directly, but often through car accidents or drowning or heart attacks related to seizures. Despite those numbers, epilepsy lags behind other diseases when it comes to funding for research and treatment. And while drugs make the condition manageable for two-thirds of sufferers, they can cause severe side effects. And that also leaves a third of epilepsy patients with no effective treatment.
A recent article in Newsweek discussed the disease and its treatment, the search for the cure and a community of people learning to live with epilepsy. If that's your story, call and tell us. Phone number: 800-989-8255. Email us: firstname.lastname@example.org. You can also join the conversation on our Web site at npr.org. Click on TALK OF THE NATION.
Later in the program, Philip Gourevitch returns to Rwanda 15 years after the genocide. But first, living with epilepsy. We begin in Boston with Warren Lammert, the co-founder and chairman of the Epilepsy Therapy Project, the creator of the Web site epilepsy.com. He's with us today from the studios of member station WBUR. Nice to have you on the program.
Mr. WARREN LAMMERT (Epilepsy Therapy Project, Epilepsy.com): Thank you, Neal.
CONAN: And I understand this story is your story, too, your family's story.
Mr. LAMMERT: Yes. I have a delightful, loving spirited 12-year-old girl who lives with daily waves of seizures and has since she was one years old, despite having tried literally every relevant available drug, the ketogenic diet and having an implanted medical device.
CONAN: And nothing seems to work.
Mr. LAMMERT: Despite having the best medical care from a truly committed, wonderful doctor, nothing seems to work.
CONAN: And your experience as you've gotten involved in broader approaches with other families and other sufferers is that indeed, you say epilepsy, but one person's epilepsy does not seem to bear, often, very much relation to another's.
Mr. LAMMERT: No, that's true. And, you know, I think it was just today or yesterday that Prince came out and talked about having epilepsy as a child. And certainly, there are many people who have achieved remarkable things living with epilepsy. But as you pointed out in the introduction, it's been true for 30 years that one-third of those with epilepsy, over a million people in the U.S., have had to live with uncontrolled seizures and that the side effects from the existing drugs, which include fatigue and cognitive effects, are still very severe, and that people have not been willing to talk about epilepsy.
Mr. LAMMERT: Well, I think there's a historic stigma which, you know, goes back to the perhaps understandable reactions people historically had to seeing somebody experience a seizure. It was not understood, I think, until recent centuries well that a seizure is really just excessive electrical activity in the brain, much like a migraine.
CONAN: And not being taken over by the devil.
Mr. LAMMERT: It's been seen both as a manifestation of godliness, and it's been seen too often as a sort of a negative sign.
CONAN: But scary either way. How does your daughter deal with preparing to have seizures every day?
Mr. LAMMERT: Well, she doesn't really get to prepare. And, you know, she just fights through it. Yesterday she tried, but really could not eat dinner. The day before, she had six hours of sort of unrelenting seizures with barely a break. And yet she'll get through that or get halfway through that and crack a joke halfway through, and persevere with her objective. So, you know, there are people who have tremendous strength and positive frames of mind who manage to live with epilepsy.
CONAN: Does she go to school? Does she have friends?
Mr. LAMMERT: She goes to school with an aide who's terrific. And her classmates have been wonderfully accepting, I have to say. She's very outgoing and loving and does have friends.
CONAN: Well, we want to get other voices in the conversation. If what you're hearing from Warren Lammert is your story, too, if you suffer from, if you are related to somebody who suffers from epilepsy, call and tell us your story about living with this condition: 800-989-8255. Email is email@example.com. And let's begin with Lisa, Lisa calling us from Cincinnati.
LISA (Caller): Hi.
CONAN: Hi, Lisa.
LISA: Thanks for having me on.
CONAN: Sure, go ahead.
LISA: I have a five-and-a-half-year-old daughter that has epilepsy. She had her first seizure when she was three. And the problems that we have had, I'm concerned for her future, socially. We have already had people that won't babysit for her because one woman actually came right out and said, I don't want the responsibility. She said, what if she has a seizure? What if she bites her tongue?
And I was a bit taken aback, I think, and disappointed at that level of ignorance in this day and age. I was very upset. And then, you know, also, there have been mothers who won't allow their children to play with her. They won't have her over to their house for play dates, and they won't come right out and say why. But the play dates stop as soon as they find out she has epilepsy.
CONAN: Warren, I wonder if you have any advice for Lisa.
Mr. LAMMERT: Well, I can say that my wife, Kathy, has done a wonderful job of reaching out to Sylvie's class and talking about epilepsy to them, explaining that it's not something that somebody can get from another child or person, and that it is just a storm of electricity, which passes. You can't swallow your tongue. You're going to be fine on the other side.
Mr. LAMMERT: Just try to sort of comfort them and not let them fall, if you can.
LISA: Yeah, yeah.
Mr. LAMMERT: So I have found that if you reach out to people and help them understand better, they can be quite accepting.
LISA: Yeah, and that's really what I've kind of tried to do. I just - it's disappointing to me that I still do find people that - I find them making a lot of excuses, you know, as to why they can't have her over. And it's happened more often than I wish that it would have. And I, you know, I know what's going on, and it is disappointing to me.
But you're right. I think that's a good idea, going forward. She's starting kindergarten in the fall. Speaking to her class may help. Of course, that may hurt, too, because then, you know, there might be people who may would've reached out to her socially and maybe that closes that door, you know. And I am concerned about that.
There are people that we don't tell, because now we don't tell sitters. Because her seizures are 100 percent under control on the medication right now. And so there are people that we don't tell because I think it would cause a lot of trouble. And, you know, maybe that's the wrong approach.
CONAN: Is it wise not to tell the sitters when, you know, you never know what could happen?
Mr. LAMMERT: Well, I think, you know, every parent and person with epilepsy has to make those choices themselves. But I think it is a good idea for caregivers to have a treatment plan and understand that you can have breakthrough seizures. If you do have a seizure, it lasts longer than a certain amount of time, you ought to take these steps, et cetera.
LISA: Yeah, yeah. There are certain sitters that we tell, you know, ones that we know very well, you know, and that we use most often. But it is difficult. It is difficult. And I'm concerned about her future. I guess, you know, she's a great kid and I just worry - I worry about other people's reactions more so than her. And she's starting to ask why she doesn't have more opportunity to play with other children, you know, why I can't I play with this person? And I think, well, gosh, you know, I've called her mother three times and, you know…
(Soundbite of laughter)
LISA: …she always has an excuse as to why her daughter can't play.
Mr. LAMMERT: Yeah.
LISA: It's disappointing to me, I guess. That's been the most difficult part of this.
CONAN: Lisa, we wish you and your daughter the best.
LISA: Thank you very much.
CONAN: So long.
CONAN: Joining us now is Dr. Orrin Devinsky, who is with us from our bureau in New York. He's professor of neurology at NYU's School of Medicine, a director of the Comprehensive Epilepsy Center in New York. And nice to have you on the program today.
Dr. ORRIN DEVINSKY (Professor of Neurology, NYU School of Medicine; Director, Comprehensive Epilepsy Center): Thanks so much for having me.
CONAN: And we should also mention that you are - among your patients is Warren Lammert's daughter, Sylvie.
Dr. DEVINSKY: Correct.
CONAN: And how is she doing?
Dr. DEVINSKY: You know, I think Warren related it very well. She has been an incredible trooper and has a remarkable spirit, but her seizure control is terribly disappointing. She has waves of small seizures throughout the day. And at times, in the late afternoon and early evening, they can really consume much of her life. And although they're not major convulsive seizures usually, and they can be, they're more staring and blinking seizures, they really just interrupt her life. And she also does have the more major seizures, as well.
So it speaks to the need in the United States for more recognition, for more research and for a cure.
CONAN: And for a cure. You work in a field where you can help people. You can help people control seizures, most of them. Can you offer them a cure?
Dr. DEVINSKY: Unfortunately not. There are only really Band-Aids at this time. The medications that we use, which there's more than a dozen of, by and large control seizures. They help control the symptoms that are there, but they in no way treat the underlying brain process that leads to epilepsy.
We're fortunate that the majority of children who have epilepsy outgrow it, but many of them have seizures that are not controlled, like Sylvie's, and many others continue to have seizures all the way through adulthood.
CONAN: And is there any prospect of something that is beyond control and, as you suggest, even a third of people are not susceptible to control, and even those controls, the side effects can be terrible.
Dr. DEVINSKY: Well, there are some alternative therapeutic options, surgery being one for the group of people whose seizures come from a relatively restricted region of the brain, and that region can be safely removed, in which the benefits clearly outweigh the potential harms.
But apart from that relatively small group - as Warren said, maybe a million people with poorly controlled epilepsy in the United States - probably no more than 50 to 70,000 are good candidates for surgery now.
So for the majority of people, we don't have great options. And I think the question of a cure, there's tremendous research opportunities, but I don't think there's anything in the next five or seven years that is likely to be a cure for epilepsy, or even certain forms of epilepsy.
CONAN: And Warren Lammert, that's why the Web site you've created, among other things, helped people gather together to figure out how to live with this condition.
Mr. LAMMERT: Right. Not only do we advocate for and raise money for and work to help advance new therapies, but we certainly focus on providing community that can help bring patients and families together to share their experiences and the wisdom they learn in living with epilepsy.
CONAN: Warren Lammert is with us from Boston. Dr. Orrin Devinsky with us from New York. We're talking today about living with epilepsy. If this is your story, your family's story, give us a call: 800-989-8255. Email us, firstname.lastname@example.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
(Soundbite of music)
CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington. Epilepsy affects a startling number of Americans, three million, and takes as many lives every year as breast cancer. A recent cover article in Newsweek discussed the disorder and the struggle many people who suffer from seizures face. You can find a link to that piece on our Web site. Go to npr.org. Click on TALK OF THE NATION.
And if this is your story, we'd like to hear from you. Give us a call: 800-989-8255 if you're part of the epilepsy community. Email us: email@example.com. You can also join the conversation on our Web site. That's at npr.org. Click on TALK OF THE NATION.
Our guests are Warren Lammert, co-founder and chairman of the Epilepsy Therapy Project, and also with us, Dr. Orrin Devinsky, director of the Comprehensive Epilepsy Center in New York City, professor of neurology, neurosurgery and psychiatry at the NYU School of Medicine.
Let's see if we can get another caller on the line. Mike is with us, calling from Portland, Oregon.
MIKE (Caller): Hi, yes. I'm calling - I have a son who was diagnosed with absence seizures or petit mal seizures at age five, and he's now 12, medicated and well-controlled. And our experience has been simply that while the representation of epilepsy as an issue is - focuses on the very severe cases, which really deserve a lot of attention, and yet there's probably a large number of people like ourselves who have medicated, controlled epilepsy conditions in the family.
And we've never been able to connect with or find much support for that kind of milder situation. And it's just interesting that, you know, as a parent, you're very alarmed, and yet when you go and seek out information, you find even-more-alarming cases than your own.
But the community of people who are just living with it quietly, and it's an issue, there's concerns about it, we don't feel - I haven't been able to find much connection or support for that situation.
CONAN: And have you been to epilepsy.com?
MIKE: I was just looking at it for the first time now, and I do see some information. But I'm thinking more about how to, you know, meet - so my child can meet other kids who have to deal with what is basically a how-do-I-take-my-medication-every-day challenge and how do I tell other people that I have this mild condition - you know, making that sort of social connection so that he can integrate it into his own life.
CONAN: Warren Lammert, any advice for Mike?
Mr. LAMMERT: Well, I would say that the epilepsy.com community embraces people who are living successfully with epilepsy and facing those kinds of issues, and I think connections can be made there, and those kinds of issues are explored.
I understand very much where you're coming from, and you know, two-thirds of people on the flip side of people with epilepsy are controlled by the existing meds, although they do have side effects. And it's very important for those people to find that support.
CONAN: Mike, good luck.
MIKE: Thank you.
CONAN: Bye-bye. Let's see if we can go now to Theresa, Theresa with us from Cleveland.
THERESA (Caller): Hello.
THERESA: Hi. My son began having seizures just before his third birthday. And like your guest, we ran through all the epilepsy medications without them ever helping him. We were about to go to the compassionate care list. He was not a candidate for surgery. He was not a candidate for the implants. And my husband just began researching as much as he could, and we actually went to another specialist.
We were at an epileptologist. We went to a metabolic neurologist to see, is it something in the metabolism? Is it something with his food? And we got a few results there, but they didn't help his seizures. And finally my husband said, can you measure his brain neurotransmitters? I think it's something happening in the brain. And the doctor shrugged and said we can do a spinal tap. And we said let's do that.
They sent it out to a specialized lab now that is, I guess, in Atlanta that's doing neurotransmitter research. They found my son was low in dopamine, and we have started him on dopamine, which is not an anti-epileptic drug. It has controlled his seizures more than anything.
A good day used to be five to seven seizures, and now we have maybe one a day, and they're all in his sleep now.
CONAN: Let's bring in Dr. Devinsky. Is this a case of misdiagnosis or mistreatment? I'm not saying mistreatment - incorrect treatment, or is this something that could help other people?
Dr. DEVINSKY: Well, it's a fascinating case. There are some rare metabolic disorders, some diagnosed only by spinal tap that can be identified. And currently, I think the caller raises a fascinating issue in that neurotransmitters can't be directly measured.
The spinal fluid measures the metabolites of the neurotransmitter activity in the brain and the spinal cord, and there can be deficiencies or excesses of certain neurotransmitters that can be balanced. It is, however, relatively rare in epilepsy, but I think it's an area where we certainly need more research and, in specific cases, potentially more treatment.
CONAN: And it's helping in your case, Theresa.
THERESA: Yes. In fact, the hospital we go to, the metabolic neurologist and the epileptologist were on the same floor. So they were able to call in the epileptologist, and he looked at my son and said: If I didn't know your parents, I wouldn't know you were the same child.
CONAN: Well, I'm glad it's working out.
THERESA: And may I add one more thing?
CONAN: If you could do it quickly, please.
THERESA: The doctor has recommended this for some people with intractable seizures. He's done spinal taps on two dozen, and we know of one child who has been helped by just changing his diet as a result of the spinal tap, and he's seizure-free. So we thought we'd give that encouragement to others.
CONAN: Theresa, thanks very much for the call, appreciate it.
THERESA: You're welcome.
CONAN: Here's an email from Sima(ph). My daughter's been diagnosed at six years old with rolandic epilepsy, which is a mild case of epilepsy and mostly happens at night. We've been lucky that the medication has been successful. She's not had any further seizures since being diagnosed in the past year.
We were advised by her neurologist not to inform the school or her teacher that she has epilepsy because they would most likely treat her differently. We're comfortable with not telling the school, but find it sad in this day and age that epilepsy is not understood more.
And Warren Lammert, this falls into your area. Again, every parents has to make their own decision, but is this a wise course, and can schools be educated?
Mr. LAMMERT: Well, I think, again, it is very much an individual decision, but the fact that people are hesitant to talk about epilepsy I think is part of the problem and something that we're trying to fight back against and overcome.
Epilepsy is simply a disorder of the brain that reflects excess electrical activity, much like many heart attacks reflect problems with electrical activity in the heart. And I think to the degree that people are willing to talk about and get out in front with epilepsy, I think we can see people live much better, happier lives. And that's a contribution they can make to the community and to themselves.
It is a challenge, and they have to be prepared and personally ready to take that on.
CONAN: Well, Warren Lammert, we wanted to thank you very much for being with us today. We appreciate your time, and we wish you and your daughter the best.
Mr. LAMMERT: Well, thank you so much, Neal.
CONAN: Warren Lammert is co-founder and chairman of Epilepsy Therapy Project, epilepsy.com. His daughter has frequent seizures, and her doctor is Dr. Devinsky, who's staying with us to answer your questions about epilepsy. 800-989-8255. Email us: firstname.lastname@example.org.
Let's go to Mark, and Mark's with us from Chelsea, Michigan.
MARK (Caller): Hi.
CONAN: Hi, Mark. Go ahead, please.
MARK: I have an 11-year-old son with intractable seizures. He's tried four medications. Actually, he's now trying a fifth one in conjunction, and so far they've pretty much failed. I've been researching this for the last couple of years very intensively, and I've been finding very interesting connections between epilepsy and inflammation of the brain, things called proinflammatory cytokines. And I'm wanting to find out, one, is there more research looking into where does the inflammation come from? But also I'm an acupuncturist, and I've been able to shut them down with certain acupuncture treatments, and I've also been researching the use of specific amino acids.
Dr. Sidney Kurn in Santa Monica, California, who wrote a book, "Integrative Medicine for Neurological Disorders," has a chapter on seizure activity and uses a specific protocol that I've been trying with my son that has been helping quite a bit.
CONAN: Dr. Devinsky, can you help us out here?
Dr. DEVINSKY: Yeah, so you've covered a lot of ground. Just briefly, I think inflammation is an exciting area of research. It's an area where we in epilepsy have not felt it's been relevant, and I think there is accumulating animal data and evidence from human cases that inflammation can contribute, and essentially you touched on some of this.
When you have seizures, you may trigger inflammation. The inflammation may lead to more seizures, and you essentially get a positive feedback loop, and so you need to block that inflammatory cycle.
Is this relevant to a tiny group of people with refractory epilepsy? Definitely. Is it more relevant also, to a lesser degree, to a broader group of people with epilepsy? Quite possibly. So that's an important area of research.
You also asked about the amino acids. Again, these become some of the most difficult things. All the alternative therapies, whether it's accupuncture, osteopathic therapy, chiropractic therapy, hyperbaric oxygen, amino acids, Chinese herbal medications - hundreds, literally, of alternative therapies, none are proven. And it just - in medicine, of course, we have this very dangerous thing where doctors are biased, patients are biased, therapists are biased, parents are biased. So without double-blind studies, we just have to be very humble.
MARK: And Dr. Schachter at Harvard University is beginning studies with Huperzine A, which is a Chinese moss. He has stated it has glutamate quelching activity, and, you know, the research needs to be out there.
CONAN: I think that's what Dr. Devinsky just said.
Dr. DEVINSKY: Yeah. And Dr. Schachter's actually a very close friend and colleague of mine. I know Huperzine very well. And I think Dr. Schachter would be the first one to say the animal data is very exciting and the human data is nonexistent. So I think we just need to get more data.
CONAN: Mark, continued good luck.
MARK: Thank you.
CONAN: Bye-bye. Here's an email from David in Willoughby, Ohio. I'm wondering if you could bring up this topic of SUDEP, sudden unexplained death in epilepsy. The topic is nearly always avoided, shunned by both the medical community and advocacy agencies alike. Often, the first time people hear of it is after they lose a loved one.
One in a thousand people with epilepsy die from this every year. I know it was a surprise to me when my son died a week before his fourth birthday. No one told us this could happen. In fact, the doctors previously told us you can't die from epilepsy.
My son's epilepsy was medicated and controlled. He'd had six seizures in his entire life, over a period of nearly two years. Yet one morning, I woke up to find him lying in his bed, already passed. I'm not sure what else to say right now, but I think it's very important that SUDEP be brought up during the show. However, I won't be surprised if it isn't. Well, anyway, SUDEP?
Dr. DEVINSKY: So it is a very tragic thing. I think the emailer raises an important point. And just to touch on, there are these two tales of epilepsy, and I think you've heard it on this show so far. There are the people with well-controlled seizures, children with well-controlled seizures, and they're trying to hide it or, you know, prevent social stigmas. And then there are these cases that can be deadly or very, very severe and impair their quality of life. And they're both epilepsy. And I think both need to be discussed.
I think SUDEP is not discussed enough by physicians. It's not discussed enough in the American media. It's much more discussed in the United Kingdom. And the people at greatest risk are those with severe epilepsy, with frequent seizures, with tonic-clonic or grand mal seizures, with nighttime seizures, since it often occurs during sleep.
And I think we just need to have more recognition of it and be more aware of how common it is. In the very severe epilepsy population, over the course of a decade, it can be as high as 9 percent. It's a huge number. And I think the American media has not covered it as much, and the neurological community has not discussed it as much with patients and parents, although it's much less frequent in children than young adults.
CONAN: We're talking with Dr. Orrin Devinsky, director of the Comprehensive Epilepsy Center in New York. And you're listening to TALK OF THE NATION from NPR News.
Let's go to Jen, Jen calling from Fort Wayne, Indiana.
JEN (Caller): Hi. Thanks so much for taking my call.
CONAN: Go ahead, please.
JEN: I'm a 23-year-old college student living with complex partial seizures that have been well-controlled for about a year now with medication. I had no idea that I was suffering from these seizures until I suffered a grand mal seizure my first year away at college.
And it was only then that during kind of a questionnaire that problems I'd have like deja vu and then dizziness started to come up, the peculiar odors. And considering that I found out that this is a problem that going untreated can lead to problems like dementia, I just wonder if you think that there's enough information out there to let people know that they should see a doctor about a concern like that.
CONAN: Dr. Devinsky?
Dr. DEVINSKY: I don't think there's any doubt that milder forms of epilepsy are frequently missed both by patients who don't bring it up with their physicians and by physicians who hear the complaints but just brush it off or consider it some other minor problem like a migraine.
And I think the diagnosis and recognition of seizures in epilepsy is something that has not been as well-covered in medical school and residency programs as it should be, and I think it is a challenge for the future.
CONAN: And just to sway the email's comparatively mild problems like migraines - we know migraines give you terrible problems. Jen, thank you very much for the call. Good luck.
JEN: Thank you.
CONAN: Bye-bye. Here's an email from Joel in Elkhart, Indiana. My 16-year-old daughter has had complex partial epilepsy most of her life, but was only diagnosed after it increased in severity due to a head injury in a car accident. With meds, she's able to keep it under control.
I wonder, is there any possibility of it going away with age? Please speak to this form of epilepsy which isn't necessarily visible to those around her. It's often misunderstood as not paying attention or daydreaming.
Dr. DEVINSKY: So this is very similar to the last caller. Complex partial seizures are probably the most common type of seizures in adult. They are essentially staring spells or periods with impaired responsiveness. Sometimes other individuals don't recognize them. They think the person is just taking a moment to themselves.
They typically last 20 seconds to a few minutes. There's no loss of consciousness, no falling, but some mild confusion. There may be partial responsiveness or no responsiveness. And it is a very significant problem because as an adult, you can't drive with these seizures, and they can also affect employment. So they're an important problem. They make up a huge percentage of every neurologist and epilepsy specialist's practice.
CONAN: Let's see if we can get one last caller in - Kris(ph), Kris with us from Ames in Iowa.
KRIS (Caller): Hi. I just wanted to talk about the woman who called and said her daughter couldn't find playmates.
KRIS: My school's counselor had a nurse come in and discuss this with her whole class - with his whole class. And they went through the whole thing of what it was, talked about vomiting and how that was embarrassing, and fainting, and explained everything. They even had some of the parents come in, and it really helped.
CONAN: And it really helped, suggesting that more information is better than less information.
KRIS: Yes. Yes. Definitely.
CONAN: And in most cases, Dr. Devinsky, would you agree?
Dr. DEVINSKY: Absolutely. And I will just mention two other things. There's a FACES - Finding a Cure for Epilepsy and Seizures - Web site which you can look up. And there's a wonderful video on epilepsy first aid done by Tiki Barber, who has a child with epilepsy I care for, Chanda Gunn, who is the U.S. Women's Olympic hockey goalie - and so things like that. and it's made available free. So that way - if you'd just email FACES, you can get a copy.
KRIS: Yeah. And after this with the counselor, this episode with the counselor and a nurse - and they even had the kids, you know, think about it and what would happen if it happen to you and, you know, it doesn't change things after and…
KRIS: …his, you know, then his playmates were totally - their attitudes totally changed. So get the school involved is what I'm saying.
CONAN: Kris, thanks very much. Appreciate the advice.
CONAN: Bye-bye. And Dr. Devinsky, thanks very much for your time today.
Dr. DEVINSKY: I appreciate it. And one last comment. If there are any sibling pairs with epilepsy, there's a research project, Epilepsy Phenome/Genome Project, EPGP.org. It may help us get the cure. So any siblings who are there with epilepsy, if they could go that site, that would be awesome.
CONAN: And we'll put a link to that site on our site. So if you didn't scribble that down quickly enough, just go to npr.org/talk later today.
Dr. Orrin Devinsky joined us from our bureau in New York. He's at NYU School of Medicine, director of the Comprehensive Epilepsy Center in New York.
And coming up, Rwanda 15 years after the genocide. This is NPR News.
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