Change Our Epilepsy Story
People with epilepsy — and their caregivers — often bear the negative attitudes and beliefs surrounding epilepsy, and they don’t often talk about it as a result. This has generally steered people with epilepsy toward silence, ignorance, and away from the motivation to seek better care.
Because no one is talking about epilepsy, misconceptions and lack of understanding about seizures remain.
But what if everyone shares their epilepsy story, and how they managed to overcome the challenges so that we shift the conversation to education, safety, and cures?
What if we … #ChangeOurEpilepsyStory
What Is 'Change Our Epilepsy Story'?
Change Our Epilepsy Story is an awareness campaign initially being rolled out in Philadelphia and Phoenix. The campaign encourages our community to start talking about their epilepsy and seizures so that others will be empowered to seek help. If we keep sharing our stories about epilepsy, we can educate those around us, and in turn, address the misconceptions and lack of awareness that exists about epilepsy and seizures.
How Can I Help Build Awareness?
There are many ways for you and your loved ones to participate and educate others about seizures and epilepsy. Take action, get involved, and build awareness for our community.
1. Share Your Story on eJourney
We need our community to raise its voice. To share their story about epilepsy. The challenges and the successes that come with being strong and never giving up. We ask that you take the time to share your unique journey – wherever you find yourselves in the fight. This includes family, friends, caregivers, and anyone with an epilepsy story. Words, photos, and videos all make this more real and can create understanding and help address the challenges that our community faces every day.
2. Encourage Someone to Take Seizure First Aid Training
Ask your loved ones, friends, neighbors, co-workers and others in your community to take a seizure first aid training. The Seizure Recognition and First Aid Certification training can help those around you increase their knowledge, skills, and confidence in recognizing seizures and safely administering seizure first aid. Participants who successfully complete the course will receive a two-year certification. The course lasts approximately 90 minutes. Having everyone around you learn how to help you during a seizure can make a difference and save your life.
3. Take Action on Social Media
We want to hear from you by using #ChangeOurEpilepsyStory! How have you changed your epilepsy story? What challenges have you experienced in your journey? What made you decide to tell your story? Most importantly, what facts do you wish other people knew about living with epilepsy? Together, we can #ChangeOurEpilepsyStory and everyone’s perspective on epilepsy and seizures.
Epilepsy in Different Communities
Misinformation about seizures adds to negative outcomes and perception for people with epilepsy. Feelings of shame, judgement, or confusion can reduce quality of life even when seizures are well controlled.
Compared to other racial and ethnic groups in the epilepsy community, African American and Hispanic populations with epilepsy face additional obstacles when seeking care.
Talking about feelings of fear or shame and sharing our stories helps break down barriers. Take part in #ChangeOurEpilepsyStory to inspire your community.
Seizures and the Black Community
Many African Americans experience seizures and epilepsy, so receiving care is critical. Access to quality care helps with seizure control and improves daily life.
Reducing misconceptions about seizures encourages people to seek the care they need. While anyone can have a seizure, below are facts about seizures in the African American community.
- According to the U.S. Census Bureau and the Centers for Disease Control and Prevention (CDC), 578,000 African Americans have epilepsy or a seizure disorder.
- Over 25,000 African Americans are diagnosed with seizures or epilepsy each year. In fact, African Americans are more likely to be diagnosed with epilepsy than White Americans.*
- While African Americans with seizures and epilepsy are more likely to experience the critical issues mentioned above, they are less likely to experience active epilepsy than White Americans.* This means, African Americans are more likely to have seizures that are controlled by medication.
Seizures and the Hispanic Community
Hispanics are made up of diverse cultures and values. They are also one of many other ethnic and racial groups disproportionately impacted by health disparities.
- Epilepsy also affects more than 710,000 Hispanics in the U.S.
- In some Hispanic cultures, epilepsy may be perceived as contagious, or a mental or psychiatric condition adds to misunderstandings and delays in getting the proper treatment.
- Hispanics in the U.S. are less likely to have access to health insurance or an epilepsy specialist limiting their ability to get the proper seizure control.
Help us stop the stigma and participate in our social media campaign, #ChangeOurEpilepsyStory, to spread awareness in your community.
Where Can I Find Local Support?
There are many local Epilepsy Foundation offices available across the United States that provide support, resources, and help when you need it most. Featured below are several local offices, information on the services they offer, and their contact information.
Epilepsy Foundation Eastern Pennsylvania
The Epilepsy Foundation Eastern Pennsylvania offers a variety of free programs and services to help you. Key programs include community education and outreach, epilepsy educational conferences and workshops, seizure training and recognition programs, and more.
To learn more, please call (215) 629-5003 or (866) 748-8008 en español. Contact the Epilepsy Foundation Eastern Pennsylvania by email at efepa@efepa.org.
Epilepsy Foundation Arizona
The Epilepsy Foundation Arizona provides programs and services that support people and families impacted by epilepsy. With the strength of a national organization and network of epilepsy experts, the Epilepsy Foundation Arizona provides national scope and local impact.
To learn more, please contact (602) 282-3515. Contact the Epilepsy Foundation Arizona by email at arizona@efa.org.
*References: National Health Interview Survey (NHIS) 2017 and National Survey for Children's Health (NSCH) 2018-2019
CDC. MMWR 2012, Nov 16;61(45):909-913.
National Research Council. (2012). Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press.
This awareness campaign is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $320,486.54 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.
Resources
Epilepsy Centers
Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.
Epilepsy Medication
Find in-depth information on anti-seizure medications so you know what to ask your doctor.
Epilepsy and Seizures 24/7 Helpline
Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.
Tools & Forms
Download our seizure tracking app, print out seizure action plans, or explore other educational materials.
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