Last week I wrote about my friend Allison Austin in Virginia whose husband died one year ago after a seizure. He died from a syndrome that is little known, even among Americans with epilepsy. Allison asked me to tell his story.
She says, “It wasn’t until I got a copy of his death certificate that I even learned the phrase SUDEP. They never said you could die from a seizure. They said you can’t drive. Don’t climb a ladder. No swimming. Why isn’t there a little one-sentence blurb that says that this is a possibility, that this can happen to people who have seizures?”
“What did I do? I went and took a shower. But if I had known he could die, I wouldn’t have left him alone.”
Allison told me that websites like Web MD don’t mention SUDEP (Sudden Unexpected Death in Epilepsy). If you’re dealing with a new diagnosis, just surfing the Web, you won’t find it. You have to google SUDEP directly to get the story.
Since Jeff’s death, Allison has met others who lost loved ones to SUDEP but none knew ahead of time that this was possible. Doctors don’t like to scare people about a rare complication, she says; they want to tell people with epilepsy that they can live full rich lives. They can and do. But Allison feels they need to be warned as well.
The causes of SUDEP are not known, although it occurs more frequently in patients with certain kinds of seizures, those whose seizures are not controlled by medication, and those who experience an unattended seizure. At this point, the best chance to avoid SUDEP comes from taking prescribed medication and, perhaps, from having someone around.
Should doctors warn — and frighten — people about something rare that cannot be anticipated and cannot be cured? Will low-risk patients and families worry needlessly about death at any moment?
Here’s Allison’s answer.
“They warn parents about SIDS, and SIDS is even less common than SUDEP. But every parent who has a baby knows that there’s sudden infant death syndrome. We’re told: Put them on their backs. Do all this stuff to try to lower the chances.
“You can’t watch a person 24-7. I recognize that. I couldn’t have been on top of Jeff for the rest of his life. But maybe after a seizure you would monitor for, say, 12 hours.”
Other things that might be done include buying a bed pad that sounds an alarm when a seizure has begun, or getting a seizure dog, although that is expensive.
Allison says, “I didn’t have those options because I didn’t even know about SUDEP.”
“I felt responsible for his death. I still feel responsible for his death. You can’t convince me I’m not. So what I need to do is find my peace with that. I need to find within myself the ability to forgive myself for leaving him alone.”
Allison continues, “We want public awareness. If they can give you a one-page document–and I still have the little sheet they gave us from the hospital where it says ‘you can’t drive’–it should be on there…
“Sometimes you have to start at the grassroots to get to the point where you can get a community of people, in this case doctors, to provide you with information about the condition.”
But doctors, who are surely concerned about sudden deaths, don’t know enough to put numbers on SUDEP. Although the condition was recognized 100 years ago, it began appearing regularly in the medical literature only in the last 15 years, mostly in Europe. Researchers are still arguing about what to call it, how to study it, even what it is, research made more difficult by the small number of patients.
“Jeff is a little on the older side for this condition. Most people who die from SUDEP are in their teens and early 20s. Children as young as a year old die from it. Danny (of the Danny Did Foundation) was 4 years old when he died. Chelsea (of the Chelsea Hutchison Foundation) was 16.”
Allison’s voice fills with passion. “Parents and caregivers need to know about it.”
Mentioning her career in environmental education, she adds, “Maybe I’m not going to be saving the trees from now on. Maybe this is what my focus is going to be: trying to get the word out.
“Everybody who I have met who has lost a loved one just wants people to know that you can lead a long and healthy life, but there is a danger associated with this condition and you need to know about it.
“Everybody knows the acronym SIDS. I want everybody to know the acronym SUDEP. I want you to know it. Whether you know exactly what happens from it, that doesn’t matter. But if you know the acronym, you can ask about it later when you’re at the doctor.
“There is not a single person I’ve met in this last year who knew of the condition prior to their son or daughter or husband dying from it.
“We were all in the dark. All.”
Looking from the outside, I see two well-intentioned forces that are hard to reconcile: physicians who want to get the facts right before scaring people and grieving families who want to warn others.
Doctors in Europe, Australia and Canada are on their way to sharing information about SUDEP with patients. Should America follow?
— Marion Franck lives in Davis with her family. Reach her at firstname.lastname@example.org