Nav: Home

People with epilepsy: Tell us about rare risk of death

February 23, 2017

MINNEAPOLIS - People with epilepsy want their health care providers to tell them about a rare risk of death associated with the disorder, according to a preliminary study released today that will be presented at the American Academy of Neurology's 69th Annual Meeting in Boston, April 22 to 28, 2017.

Sudden unexpected death in epilepsy (SUDEP) is an uncommon but fatal complication of epilepsy, affecting 1 in 1,000 adults with the disorder every year. Many people who are diagnosed with epilepsy are unaware that there's a possibility of unexpectedly dying from the disorder."Many physicians are hesitant to discuss this rare risk of death because they don't want to terrify their patients," said study author Lucretia Long, CNP, at The Ohio State University Wexner Medical Center in Columbus, Ohio, and a member of the American Academy of Neurology.

For the study, 44 people with epilepsy and/or caregivers were given an information sheet about the rare risk of death. Participants were then given a questionnaire assessing their perception of the information.

Of the 42 participants who completed the survey, 100 percent felt that adult patients with epilepsy had a right to be informed about SUDEP, and 92 percent agreed that health care professionals should be required to share that information with them. Additionally, 81 percent said that knowing about the rare risk of death motivated them to take their medication and 85 percent said the information encouraged them to better manage their seizure triggers.

While 30 percent of participants said that SUDEP awareness prompted increased fear, most agreed that it motivated them to take better care of themselves.

"Talking about this rare risk of death is frightening and difficult," said Long. "But this study indicates people with epilepsy would prefer to be armed with information, despite how tough the discussion might be. In fact, knowing about the risk could help save lives if it motivates patients to adhere to their medication and manage additional factors that may lower seizure threshold."
-end-
Learn more about epilepsy at http://www.aan.com/patients.

The American Academy of Neurology is the world's largest association of neurologists and neuroscience professionals, with 32,000 members. The AAN is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer's disease, stroke, migraine, multiple sclerosis, concussion, Parkinson's disease and epilepsy.

For more information about the American Academy of Neurology, visit http://www.aan.com or find us on Facebook, Twitter, Google+, LinkedIn and YouTube.

American Academy of Neurology

Related Epilepsy Articles:

Good news for kids with epilepsy
There's good news for kids with epilepsy. While several new drugs have come out in the last several years for adults with epilepsy, making those drugs available for children and teenagers has been delayed due to the challenges of testing new drugs on children.
People with epilepsy: Tell us about rare risk of death
People with epilepsy want their health care providers to tell them about a rare risk of death associated with the disorder, according to a preliminary study released today that will be presented at the American Academy of Neurology's 69th Annual Meeting in Boston, April 22 to 28, 2017.
New epilepsy gene network identified by scientists
Scientists have discovered a gene network in the brain associated with epilepsy.
Epilepsy -- why do seizures sometimes continue after surgery?
New research from the University of Liverpool, published in the journal Brain, has highlighted the potential reasons why many patients with severe epilepsy still continue to experience seizures even after surgery.
Redox biomarker could predict progression of epilepsy
Approximately 2.9 million people in the United States suffer from epilepsy, according to the CDC.
Many Malaysian children with epilepsy are vitamin D deficient
Long-term use of antiepileptic drugs is a significant risk factor for vitamin D deficiency in children with epilepsy.
Changes in heart activity may signal epilepsy
Researchers at Case Western Reserve University have found that the parasympathetic nervous system modulates breathing and slows the heart rate of sleeping children with epilepsy substantially more than in healthy children.
Few answers in understanding death from epilepsy
To increase understanding of mortality in epilepsy, including SUDEP, Partners Against Mortality in Epilepsy (PAME) unites physicians, scientists, health care professionals, people with epilepsy, caregivers and bereaved family members for a unique conference that facilitates collaboration and spurs action.
New insights into epilepsy drug Retigabine
A study published ahead of print in the Journal of General Physiology has revealed new insights into Retigabine, a known pharmacological treatment for epilepsy.
Are women with epilepsy using effective contraception?
In the largest study of contraceptive practices of women with epilepsy, 30 percent did not use highly effective contraception despite being at higher risk of having children with fetal malformations due to the anti-epilepsy medications they take.

Related Epilepsy Reading:

Best Science Podcasts 2019

We have hand picked the best science podcasts for 2019. Sit back and enjoy new science podcasts updated daily from your favorite science news services and scientists.
Now Playing: TED Radio Hour

Changing The World
What does it take to change the world for the better? This hour, TED speakers explore ideas on activism—what motivates it, why it matters, and how each of us can make a difference. Guests include civil rights activist Ruby Sales, labor leader and civil rights activist Dolores Huerta, author Jeremy Heimans, "craftivist" Sarah Corbett, and designer and futurist Angela Oguntala.
Now Playing: Science for the People

#521 The Curious Life of Krill
Krill may be one of the most abundant forms of life on our planet... but it turns out we don't know that much about them. For a create that underpins a massive ocean ecosystem and lives in our oceans in massive numbers, they're surprisingly difficult to study. We sit down and shine some light on these underappreciated crustaceans with Stephen Nicol, Adjunct Professor at the University of Tasmania, Scientific Advisor to the Association of Responsible Krill Harvesting Companies, and author of the book "The Curious Life of Krill: A Conservation Story from the Bottom of the World".