Learn more about SUDEP, its risk factors, and the importance of epilepsy awareness and management.
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.
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.
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.
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.Well, I wanted to ask about this concept of community, because you're really building a sense of community.
Sudden Unexpected Death In Epilepsy Seizure Danny Did Foundation Northwestern Medicine
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