i777777o7765626d64o636f6dz.oszar.com Open in urlscan Pro
172.67.220.76  Public Scan

Form analysis
2 forms found in the DOM

https://i777777o7765626d64o636f6dz.oszar.com/search/search_results/default.aspx

<form class="vn-search-wrapper" action="https://i777777o7765626d64o636f6dz.oszar.com/search/search_results/default.aspx">
  <div class="webmd-typeahead vn-typeahead" required="" aria-haspopup="listbox" role="combobox" aria-expanded="false" aria-owns="webmd-typeahead" matchwidth="false">
    <div class="webmd-input__div webmd-input-noLabel webmd-input--medium"><!--[--><!--v-if--><!--v-if--><input class="webmd-input__inner" type="text" autocomplete="off" value="" name="query" placeholder="Search WebMD" valuekey="value"
        matchwidth="false" triggeronfocus="false" triggeratlength="3" selectwhenunmatched="false" debounce="300" placement="bottom-start" hideloading="false" popperappendtobody="true" aria-label="Enter search terms" role="textbox"
        aria-autocomplete="list" aria-controls="webmd-typeahead" aria-owns="webmd-typeahead"><!--v-if--><!--v-if--><!--v-if--><!--]--></div>
  </div><button type="submit" class=""> Search </button>
</form>

POST

<form action="" method="POST" style="all:unset;float:left;">
  <input type="hidden" name="URL_Adresi" value="https://www.webmd.com/epilepsy/video/schuele-stanton-epilepsy">
  <select name="DNS_Adresi" onchange="this.form.submit()" style="all:unset;border:1px solid silver;border-width:0;margin:0px 0px 0px 20px;background-color:transparent;color:black;line-height:20px;text-align:left;padding:0 5px;font-size:14px;">
    <option value="0" selected="true">Otomatik - 172.64.153.18</option>
    <option value="11">CloudFlare DNS</option>
    <option value="12">Türk Telekom DNS</option>
    <option value="13">Google DNS</option>
    <option value="14">Open DNS</option>
  </select>
</form>

Text Content

Skip to main content
 * Home
   
 * Conditions
   Back
   
   
   CONDITIONS
   
   View All
      
    * ADD/ADHD
    * Allergies
    * Arthritis
    * Atrial fibrillation
    * Breast Cancer
    * Cancer
    * Crohn's Disease
    * Depression
    * Diabetes
    * DVT
    * Eczema
    * Eye Health
    * Heart Disease
    * HIV & AIDS
    * Lung Disease
    * Lupus
    * Mental Health
    * Multiple Sclerosis
    * Migraine
    * Pain Management
    * Psoriasis
    * Psoriatic Arthritis
    * Rheumatoid Arthritis
    * Sexual Conditions
    * Skin Problems
    * Sleep Disorders
    * Ulcerative Colitis
      
    * View All

 * Drugs & Supplements
   Back
   
   
   DRUGS & SUPPLEMENTS
   
      
    * Drugs
    * Supplements
    * Pill Identifier
    * Interaction Checker
      
      

 * Well-Being
   Back
   
   
   WELL-BEING
   
      
    * Aging Well
    * Baby
    * Birth Control
    * Children's Health
    * Diet & Weight Management
    * Fitness & Exercise
    * Food & Recipes
    * Health & Balance
    * Healthy Beauty
    * Men's Health
    * Parenting
    * Pet Health
    * Pregnancy
    * Sex & Relationships
    * Teen Health
    * Women's Health
      
      

 * Symptom Checker
 * Find a Doctor
 * More
   Back
   
   
   MORE
   
      
    * News
    * Blogs
    * Webinars
    * Newsletters
    * WebMD Magazine
    * Best Hospitals
    * Support Groups
      
      

   
 * Privacy & More

Subscribe

Log In

Search
Subscribe



   
   
   
 * Epilepsy/
 * Videos/
   
   

Epilepsy Guide
   
 * Overview
 * Types
     
   * Types of Epilepsy & Seizures
   * Epilepsy in Women and Children
     
 * Tests & Diagnosis
 * Treatment
 * Living With
     
   * Daily Life
   * Epilepsy Resources
     
   
 * View Full Guide


UNDERSTANDING SUDDEN UNEXPECTED DEATH IN EPILEPSY

Understanding Sudden Unexpected Death in Epilepsy

Click to Unmute

00:00
00:00

00:00GO LIVE



Facebook
Twitter
Email
Embed
SpeedNormal
Autoplay






UNDERSTANDING SUDDEN UNEXPECTED DEATH IN EPILEPSY


About Transcript

Learn more about SUDEP, its risk factors, and the importance of epilepsy
awareness and management.

John Whyte, MD, MPH
Chief Medical Officer, WebMD

Stephan Schuele, MD
Chief of Epilepsy and Clinical Neurophysiology, Northwestern Medicine

Tom Stanton
President, Danny Did Foundation

© WebMD, LLC. All rights reserved.

WebMD does not provide medical advice, diagnosis or treatment.

See additional information.

[MUSIC PLAYING]

JOHN WHYTE
Welcome, everyone. I'm Dr. John Whyte. I'm the Chief Medical Officer at WebMD.

Today, I want to spend some time with you talking about epilepsy, particularly
sudden unexpected death in epilepsy. Joining me to help provide insight are two
experts. Dr. Stephan Schuele; he is chief of Epilepsy and Clinical
Neurophysiology in the Department of Neurology at Northwestern Medicine. And Tom
Stanton; he's the president of the Danny Did Foundation. Gentlemen, thanks for
joining me today.


STEPHAN SCHUELE
Thanks for having us.


JOHN WHYTE
Stephan, I want to start off with-- can you provide an overview for the audience
of what we mean by sudden unexpected death in epilepsy? We've heard about sudden
death in heart disease, but what does it mean when we're talking about epilepsy?
And do we know the risk factors?


STEPHAN SCHUELE
Very good question. Yeah, you know, when we think about seizures and epilepsy,
we kind of-- everybody can imagine that you can have a trauma, or you could
drown from a seizure. You can be involved in an accident. But I think what a lot
of people are not aware of is the fact that you can actually die from a seizure
itself. You know, the seizure can be so strong that you don't wake up
afterwards.

That is, fortunately, extremely rare and happens, you know, in 1 in 1,000
patients a year. So if I see 1,000 patients, it happened in one patient. But
obviously, it happens in my practice because I see patients every day with
epilepsy. It is even more common in patients who have really bad epilepsy. So
that's one of the risk factors. So patients that are not controlled on their
medications, the risk goes up.

To keep it in perspective-- most patients with epilepsy are otherwise healthy.
You know, it affects you in your best years of life often.


JOHN WHYTE
That's why advocacy is so important-- helping explain to folks with epilepsy and
their caregivers, what sudden unexpected death may mean, as well as the general
public. As you alluded to, there's some misconceptions. So, Tom, tell us a
little bit about the mission and what's your objectives.


TOM STANTON
Sure, thanks, John. You know, when we started, unfortunately, it was after a
tragedy that our family experienced. My nephew, Danny, had epilepsy, was
diagnosed around the age of 2. And like Stephan alluded to, he was otherwise
healthy, which is oftentimes the case for people with epilepsy.

He had about four seizures over the next 2 and 1/2 years that his parents
witnessed. And they were all during sleep, which is something that, you know,
some people aren't even aware of that seizures can happen during sleep. And it's
fairly common. Danny was 4 and 1/2 and he went to a routine checkup with his
neurologist. They adjusted his medication based on weight gain. And it was 4
days later that his mom found him unresponsive. He had been lost, and they
didn't know why.

It wasn't until the death certificate was administered that they saw this term
SUDEP. And it was just this kind of shocking experience. Not only did they lose
their son, who they had been with the day prior, but they lost it to a risk that
they had never been counseled about, they had never heard of.

And so his parents decided they didn't want that to happen to other families and
established that Danny Did Foundation to help other families avoid that
scenario.


JOHN WHYTE
Thank you, Tom, for sharing that story and to his parents as well, which really
helps us to better advocate. Tom, where are we kind of in this landscape of
educating folks, raising awareness? Because in some ways, we want to remind
people that you can have a normal life, right? You might have to have some
adjustments. But then we want to say, but wait, you have to be alert to this
issue of sudden unexpected death. How do you bridge that and provide good
information for folks?


TOM STANTON
I think for us, it involves working both sides of the equation. So we talk with
patients and caregivers about the fact that they're being empowered with this
information. It's given from a place of power, empowerment and not fear. And
sometimes patients or caregivers have to instigate the discussion so that the
doctor feels that they have permission to move ahead with the conversation.

On the flip side, we really encourage physicians to openly discuss SUDEP for a
variety of reasons. One, both the AAN and the AES, they both recommend
disclosure. There was a 2017 SUDEP guideline in which they recommend disclosure
for all people with epilepsy. Another factor is that patients and caregivers
really desire to be informed.


JOHN WHYTE
Stephan, what's your strategy at Northwestern? How do you approach these
discussions? Or in some ways, what do you want viewers and listeners to hear in
terms of the questions that they may think about asking?


STEPHAN SCHUELE
I look at it in the broad context of education. You know, when you have your
patient coming with the first seizure, they have-- many of them have questions
which fill a full hour. And I think that that is correct, you know? If I would
have my first seizure, I would have an hour of questions for you. So I think if
you create a culture of education and being open for questions of your patients,
I think that's probably the most important aspect to actually lead into
discussing SUDEP as well.

And then, obviously, education for ourselves. My nurses know about SUDEP. All my
residents and fellows know about SUDEP. And we have several lectures a year,
which focus on the topic of SUDEP.


JOHN WHYTE
Tom, Danny Did has a lot of resources for patients, for parents, for caregivers.
Tell us about some of these resources and how folks can access them.


TOM STANTON
I think one of the most important resources is just to help patients and
caregivers know the questions to ask their doctor to help them tailor their
individual risk level. I think that's really important in terms of coming up
with a modified treatment plan is to know where do they fall on this risk
spectrum. And I think knowing what those risk factors are. So Stephan mentioned
a few of them, both of which impacted my nephew.

Even though he didn't have a high volume of seizures, he had convulsive
seizures. They happened during sleep. So I think just knowing the questions to
ask, knowing what the risk factors are, feeling like you have permission to
instigate the conversation. And those are all things that people can learn more
about on our website, which is dannydid.org.

In that worst case scenario, John, where someone has lost someone to SUDEP,
that's another way that we can support, not the way that we want to, but
offering just bereavement support to let them know that they're not alone in
suffering this kind of horrible loss. And that there's a community around this
thing called SUDEP is another way that we're there for families.


JOHN WHYTE
Well, I wanted to ask about this concept of community, because you're really
building a sense of community. Tell us about that.


TOM STANTON
Yeah, I think there's really no disease state that has achieved progress without
that drive and urgency that comes from parent advocacy. And that's really what
we were founded on, is just two parents that wanted to carry their son forward.
Epilepsy can be a really isolating disease. There's a lot of stigma around it.

So bringing people together in environments that allow them to not only gain
information and resources, but really to form relationships and social bonds,
too, is something that's important to us. We also have an event that we co-host
called Partners Against Mortality in Epilepsy, or PAME. And it's really focused
on moving forward solutions around what causes SUDEP? How can it be prevented.
What kind of research do we still need to learn more about it? And that meeting
is really the only place that we know of where people have lost a loved one to
SUDEP can come and talk with other families and gain some resources and support.


JOHN WHYTE
Stephan, in your mind, what are the priorities or the initiatives that we need
over the next year or 2 in order to reduce the incidence of SUDEP?

STEPHAN SCHUELE: For many patients with epilepsy, understanding what is the best
treatment and how vital is their treatment really starts in some way with
understanding what the worst thing is which can happen to them. You know, my
patients don't have pain every morning to take their medication. They take their
medication so it gets them through the day safely.

And I think that knowing about what they are preventing with taking their
medication I think is an important aspect of SUDEP. You know, I think number two
is we are-- Northwestern is a big epilepsy center. We offer epilepsy surgery for
patients. And we recently realized that actually the patients who are successful
undergoing surgery have reduced risk of dying from SUDEP than patients who are
not candidates or choose not to go down that route. So I think that's another
aspect that there are treatments which are available, which I think we want to
make sure patients understand that they're there.

I think there's a big push in the epilepsy community for better seizure
detection and recognition of seizures. So bed alarms, wrist alarms, things which
can make patients feel safer and also family members be quicker in responding I
think is an important aspect to it. And then, lastly, is, obviously, we want to
understand the actual mechanism of SUDEP, which is more research driven. What
makes someone to stop breathing or the medication which can prevent that from
happening from the flattening of the EEG and the lack of respiratory drive to
catch a breath and come out of it, you know, which is all what it needs to get
out of there. I think we are working hard on understanding those mechanisms and
maybe have medications eventually or stimulators or other devices which can
resuscitate patients successfully.


JOHN WHYTE
Well, certainly there is more work to be done, more research, more awareness. I
want to thank you both for really leading the charge in how we raise awareness
of SUDEP and how we can better manage it. So thank you both.


STEPHAN SCHUELE
Well, thanks for having us. [MUSIC PLAYING]





Skip Ad
   


 * UNDERSTANDING SUDDEN UNEXPECTED DEATH IN EPILEPSY
   
   Learn more about SUDEP, its risk factors, and the importance of epilepsy
   awareness and management.


 * WHAT PARENTS NEED TO KNOW
   
   One out of 10 children will have a seizure in their lifetime. Here’s what to
   do if your child is having one.


 * WHAT HAPPENS DURING A FOCAL ONSET SEIZURE?
   
   A seizure happens when a strong burst of electrical activity sends faulty
   messages to the brain. What do the two different types look like?


 * WHAT HAPPENS IN YOUR BRAIN WHEN YOU HAVE A SEIZURE?
   
   Watch what happens when abnormal electrical activity interrupts your normal
   brain function.

   

Hide Video Transcript


VIDEO TRANSCRIPT

[MUSIC PLAYING]
JOHN WHYTE
Welcome, everyone. I'm Dr. John Whyte. I'm the Chief Medical Officer at WebMD.

Today, I want to spend some time with you talking about epilepsy, particularly
sudden unexpected death in epilepsy. Joining me to help provide insight are two
experts. Dr. Stephan Schuele; he is chief of Epilepsy and Clinical
Neurophysiology in the Department of Neurology at Northwestern Medicine. And Tom
Stanton; he's the president of the Danny Did Foundation. Gentlemen, thanks for
joining me today.


STEPHAN SCHUELE
Thanks for having us.


JOHN WHYTE
Stephan, I want to start off with-- can you provide an overview for the audience
of what we mean by sudden unexpected death in epilepsy? We've heard about sudden
death in heart disease, but what does it mean when we're talking about epilepsy?
And do we know the risk factors?


STEPHAN SCHUELE
Very good question. Yeah, you know, when we think about seizures and epilepsy,
we kind of-- everybody can imagine that you can have a trauma, or you could
drown from a seizure. You can be involved in an accident. But I think what a lot
of people are not aware of is the fact that you can actually die from a seizure
itself. You know, the seizure can be so strong that you don't wake up
afterwards.

That is, fortunately, extremely rare and happens, you know, in 1 in 1,000
patients a year. So if I see 1,000 patients, it happened in one patient. But
obviously, it happens in my practice because I see patients every day with
epilepsy. It is even more common in patients who have really bad epilepsy. So
that's one of the risk factors. So patients that are not controlled on their
medications, the risk goes up.

To keep it in perspective-- most patients with epilepsy are otherwise healthy.
You know, it affects you in your best years of life often.


JOHN WHYTE
That's why advocacy is so important-- helping explain to folks with epilepsy and
their caregivers, what sudden unexpected death may mean, as well as the general
public. As you alluded to, there's some misconceptions. So, Tom, tell us a
little bit about the mission and what's your objectives.


TOM STANTON
Sure, thanks, John. You know, when we started, unfortunately, it was after a
tragedy that our family experienced. My nephew, Danny, had epilepsy, was
diagnosed around the age of 2. And like Stephan alluded to, he was otherwise
healthy, which is oftentimes the case for people with epilepsy.

He had about four seizures over the next 2 and 1/2 years that his parents
witnessed. And they were all during sleep, which is something that, you know,
some people aren't even aware of that seizures can happen during sleep. And it's
fairly common. Danny was 4 and 1/2 and he went to a routine checkup with his
neurologist. They adjusted his medication based on weight gain. And it was 4
days later that his mom found him unresponsive. He had been lost, and they
didn't know why.

It wasn't until the death certificate was administered that they saw this term
SUDEP. And it was just this kind of shocking experience. Not only did they lose
their son, who they had been with the day prior, but they lost it to a risk that
they had never been counseled about, they had never heard of.

And so his parents decided they didn't want that to happen to other families and
established that Danny Did Foundation to help other families avoid that
scenario.


JOHN WHYTE
Thank you, Tom, for sharing that story and to his parents as well, which really
helps us to better advocate. Tom, where are we kind of in this landscape of
educating folks, raising awareness? Because in some ways, we want to remind
people that you can have a normal life, right? You might have to have some
adjustments. But then we want to say, but wait, you have to be alert to this
issue of sudden unexpected death. How do you bridge that and provide good
information for folks?


TOM STANTON
I think for us, it involves working both sides of the equation. So we talk with
patients and caregivers about the fact that they're being empowered with this
information. It's given from a place of power, empowerment and not fear. And
sometimes patients or caregivers have to instigate the discussion so that the
doctor feels that they have permission to move ahead with the conversation.

On the flip side, we really encourage physicians to openly discuss SUDEP for a
variety of reasons. One, both the AAN and the AES, they both recommend
disclosure. There was a 2017 SUDEP guideline in which they recommend disclosure
for all people with epilepsy. Another factor is that patients and caregivers
really desire to be informed.


JOHN WHYTE
Stephan, what's your strategy at Northwestern? How do you approach these
discussions? Or in some ways, what do you want viewers and listeners to hear in
terms of the questions that they may think about asking?


STEPHAN SCHUELE
I look at it in the broad context of education. You know, when you have your
patient coming with the first seizure, they have-- many of them have questions
which fill a full hour. And I think that that is correct, you know? If I would
have my first seizure, I would have an hour of questions for you. So I think if
you create a culture of education and being open for questions of your patients,
I think that's probably the most important aspect to actually lead into
discussing SUDEP as well.

And then, obviously, education for ourselves. My nurses know about SUDEP. All my
residents and fellows know about SUDEP. And we have several lectures a year,
which focus on the topic of SUDEP.


JOHN WHYTE
Tom, Danny Did has a lot of resources for patients, for parents, for caregivers.
Tell us about some of these resources and how folks can access them.


TOM STANTON
I think one of the most important resources is just to help patients and
caregivers know the questions to ask their doctor to help them tailor their
individual risk level. I think that's really important in terms of coming up
with a modified treatment plan is to know where do they fall on this risk
spectrum. And I think knowing what those risk factors are. So Stephan mentioned
a few of them, both of which impacted my nephew.

Even though he didn't have a high volume of seizures, he had convulsive
seizures. They happened during sleep. So I think just knowing the questions to
ask, knowing what the risk factors are, feeling like you have permission to
instigate the conversation. And those are all things that people can learn more
about on our website, which is dannydid.org.

In that worst case scenario, John, where someone has lost someone to SUDEP,
that's another way that we can support, not the way that we want to, but
offering just bereavement support to let them know that they're not alone in
suffering this kind of horrible loss. And that there's a community around this
thing called SUDEP is another way that we're there for families.


JOHN WHYTE
Well, I wanted to ask about this concept of community, because you're really
building a sense of community. Tell us about that.


TOM STANTON
Yeah, I think there's really no disease state that has achieved progress without
that drive and urgency that comes from parent advocacy. And that's really what
we were founded on, is just two parents that wanted to carry their son forward.
Epilepsy can be a really isolating disease. There's a lot of stigma around it.

So bringing people together in environments that allow them to not only gain
information and resources, but really to form relationships and social bonds,
too, is something that's important to us. We also have an event that we co-host
called Partners Against Mortality in Epilepsy, or PAME. And it's really focused
on moving forward solutions around what causes SUDEP? How can it be prevented.
What kind of research do we still need to learn more about it? And that meeting
is really the only place that we know of where people have lost a loved one to
SUDEP can come and talk with other families and gain some resources and support.


JOHN WHYTE
Stephan, in your mind, what are the priorities or the initiatives that we need
over the next year or 2 in order to reduce the incidence of SUDEP?

STEPHAN SCHUELE: For many patients with epilepsy, understanding what is the best
treatment and how vital is their treatment really starts in some way with
understanding what the worst thing is which can happen to them. You know, my
patients don't have pain every morning to take their medication. They take their
medication so it gets them through the day safely.

And I think that knowing about what they are preventing with taking their
medication I think is an important aspect of SUDEP. You know, I think number two
is we are-- Northwestern is a big epilepsy center. We offer epilepsy surgery for
patients. And we recently realized that actually the patients who are successful
undergoing surgery have reduced risk of dying from SUDEP than patients who are
not candidates or choose not to go down that route. So I think that's another
aspect that there are treatments which are available, which I think we want to
make sure patients understand that they're there.

I think there's a big push in the epilepsy community for better seizure
detection and recognition of seizures. So bed alarms, wrist alarms, things which
can make patients feel safer and also family members be quicker in responding I
think is an important aspect to it. And then, lastly, is, obviously, we want to
understand the actual mechanism of SUDEP, which is more research driven. What
makes someone to stop breathing or the medication which can prevent that from
happening from the flattening of the EEG and the lack of respiratory drive to
catch a breath and come out of it, you know, which is all what it needs to get
out of there. I think we are working hard on understanding those mechanisms and
maybe have medications eventually or stimulators or other devices which can
resuscitate patients successfully.


JOHN WHYTE
Well, certainly there is more work to be done, more research, more awareness. I
want to thank you both for really leading the charge in how we raise awareness
of SUDEP and how we can better manage it. So thank you both.


STEPHAN SCHUELE
Well, thanks for having us. [MUSIC PLAYING]



SHOW SOURCES

Share

View privacy policy and trust info


POPULAR VIDEOS ON EPILEPSY

 * WHAT PARENTS NEED TO KNOW

 * WHAT HAPPENS DURING A FOCAL ONSET SEIZURE?

 * WHAT HAPPENS IN YOUR BRAIN WHEN YOU HAVE A SEIZURE?




MORE ON EPILEPSY

UNDERSTANDING EPILEPSY BASICS



WHAT IS EPILEPSY SURGERY?



EVERYDAY TIPS FOR A CHILD WITH FOCAL ONSET SEIZURES






Recommended



FEATURED






RELATED LINKS

   
 * Epilepsy News
 * Epilepsy Reference
 * Epilepsy Slideshows
 * Epilepsy Videos
 * Epilepsy Medications
 * Find a Neurologist
 * Brain & Nervous System
 * Children's Health
 * Drug Interaction Checker
 * Juvenile Myoclonic Epilepsy
 * Lennox-Gastaut Syndrome
   


SIGN UP FOR OUR FREE GOOD HEALTH NEWSLETTER

GET WELLNESS TIPS TO HELP YOU LIVE HAPPIER AND HEALTHIER


Subscribe


THANKS FOR SUBSCRIBING!




By clicking Subscribe, I agree to the WebMD Terms & Conditions & Privacy Policy
and understand that I may opt out of WebMD subscriptions at any time.



FOLLOW WEBMD ON SOCIAL MEDIA





DOWNLOAD WEBMD APP



Policies

About

For Advertisers

 * Privacy Policy
 * Cookie Policy
 * Editorial Policy
 * Advertising Policy
 * Correction Policy
 * Terms of Use
   

 * 
 * 
 * 

© 2005 - 2024 WebMD LLC, an Internet Brands company. All rights reserved. WebMD
does not provide medical advice, diagnosis or treatment. See additional
information.



Otomatik - 172.64.153.18 CloudFlare DNS Türk Telekom DNS Google DNS Open DNS
OSZAR »