Epilepsy Foundation Champions Need for Increased Public Knowledge, Timely Diagnosis and Proper Treatment for 3.4 Million People Living with Active Seizures in the United States

CDC: ‘More People Live with Epilepsy than Ever Before’

Under-Diagnosis of Epilepsy, Poor Seizure Management are Common and May Be Devastating or Fatal; Specialty Care, Found at Comprehensive Epilepsy Centers, is Critical if Seizures Persist

Monday, November 6, 2017

#ShareMySeizure and #AimForZero Anchor Social and Traditional Media Outreach for National Epilepsy Awareness Month

November 6, 2017, LANDOVER, MD – 

For November, National Epilepsy Awareness Month, the Epilepsy Foundation is raising public awareness of epilepsy and educating people with seizures about the importance of self-management and finding the best treatment as soon as possible.

Seizures are brief, unusual bursts of electrical activity in the brain that cause changes in how a person thinks, behaves, or feels. A person is diagnosed with epilepsy if he or she has had two or more seizures without a clear cause or has had one seizure with a likelihood of more. Depending on when and where a seizure occurs, the risks to a person can be severe. 

More people live with epilepsy in the United States and around the world than ever before. According to data released this August by the Centers for Disease Control and Prevention (CDC), more than 3.4 million people, including over 470,000 children, live with active epilepsy. In rare cases, epilepsy can cause SUDEP (Sudden Unexpected Death in Epilepsy).

The Epilepsy Foundation and its nationwide network, along with key mission partners around the country, will be featuring two distinct hashtags to engage social and traditional media audiences. #ShareMySeizure focuses on improving public understanding and recognition of the many different types of seizures and knowing proper seizure response. #AimForZero encourages people living with epilepsy and their caregivers to learn about SUDEP, talk with their healthcare provider about their risk, and take action to manage their seizures.

#ShareMySeizure is designed to help eliminate public misunderstanding about epilepsy and seizures. #ShareMySeizure encourages people with epilepsy to talk about their seizures and help others understand by sharing their story through social media. 

“When someone thinks of a seizure, a tonic-clonic convulsive seizure may come to mind,” said Epilepsy Foundation President and CEO Phil Gattone. “There are dozens of different kinds of seizures. Some people may not realize that funny feelings or unusual movements might actually be seizures. The Epilepsy Foundation is raising awareness and recognition of all types of seizures, because understanding these subtleties will help speed up the process of proper diagnosis and treatment of epilepsy. People with epilepsy have in many cases been underdiagnosed. And this under-diagnosis lasts far too long -- sometimes many years. This is why we strongly encourage everyone whose seizures are not controlled to seek out specialty care at comprehensive epilepsy centers.”

#ShareMySeizure public service announcements produced in collaboration with the CDC and CBS will air on TV stations in Chicago and Philadelphia and on CBS and Epilepsy Foundation digital properties nationwide. 

#AimForZero encourages people with epilepsy to learn about SUDEP, talk with their healthcare team about their risk, and start taking steps to explore all treatment options and manage their seizures. The Epilepsy Foundation urges people to seek out specialty care if they are still having seizures one year after diagnosis or after two failed epilepsy medicines. The Foundation also recommends people with epilepsy talk about their seizures with family members and close friends.  

“The greatest risk factor for SUDEP is frequent seizures. People who have three or more generalized tonic-clonic seizures a year have a 15-fold increased risk of SUDEP. Young adults, especially those transitioning to independent living, are also at greater risk,” said Epilepsy Foundation Chief Scientific Officer Jacqueline French, MD. “Young adults starting college or their first job deal with lots of influences that can disrupt the treatment and management of epilepsy. That is when a breakthrough seizure could occur with devastating consequences. Building support systems will help ensure seizures are managed properly.” 

Join #ShareMySeizure and #AimForZero by “liking” the Epilepsy Foundation on Facebook at facebook.com/epilepsyfoundationofamerica and following the Foundation on Twitter at twitter.com/epilepsyfdn.


About Epilepsy

When a person has two unprovoked seizures or one unprovoked seizure with the likelihood of more, they are considered to have epilepsy. Epilepsy affects more than 3.4 million people in the U.S. and 65 million worldwide. This year, another 150,000 people will be diagnosed with epilepsy. Despite all available treatments, 4 out of 10 people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control.

About the Epilepsy Foundation

The Epilepsy Foundation, a national non-profit with more than 50 local organizations throughout the U.S., has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit epilepsy.com.

Contact Name: 
Ken Lowenberg
Contact Phone: 
(301) 918-3773
Contact Email: 

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

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