How Public Health Programs Support the Epilepsy Community
Epilepsy News From: Monday, April 03, 2023
Each year, National Public Health Week is recognized during the first full week of April.
Public health is a field that focuses on improving and protecting the health of populations through the prevention and control of disease, injury, and disability. While public health initiatives benefit everyone, they can be especially important for people living with epilepsy.
For example, public health efforts may help to prevent or lower the risk of epilepsy-related injuries. They also teach the public about how to help someone when they are having a seizure. Public health initiatives can also improve one’s access to epilepsy care and treatment.
Each day of National Public Health Week is associated with a health-related topic. Below, we’ve compiled information relevant to the epilepsy community for each daily topic. You can learn more about public health and ways to improve your wellness through our programs and resources.
Monday: Teach Your Community About Epilepsy
Living with epilepsy can be stressful, especially if your loved ones do not know what to do in the event of a seizure. The people you spend the most time with, such as your friends and family, should be aware of what to do if you have one at home, at work, or even when you’re out having fun. Encourage your personal community to get Seizure First Aid Certified.
The Seizure Recognition and First Aid certification training provides information to increase the knowledge, skills, and confidence in recognizing seizures and safely administering seizure first aid. The first aid procedures in the course reflect the standard of knowledge and current best practices for seizure safety. Participants who successfully complete the course will receive a two-year certification. The course lasts approximately 90 minutes and offers free CHES credits for health educators.
In honor of National Public Health week, there will also be a live, instructor-led Seizure First Aid training. Join us on Tuesday, April 4, 2023, at 4:00 PM ET with Ayesha Akhtar, Director of Education for the Epilepsy Foundation Greater Chicago.
Tuesday: Sharing Stories to Stop Discrimination
Sometimes, when people don’t understand a condition like epilepsy, they may act incorrectly, ask hurtful questions, or make insensitive jokes. There are several potential reasons for this. When people come across something that is unfamiliar or unknown, they may feel fearful because they do not understand it or know how to respond to it.
People may also act this way because they have been misinformed or have received incomplete or biased information. This can lead to misunderstandings, stereotypes, and discrimination.
However, we can help prevent stereotypes and discrimination toward people with epilepsy by sharing personal stories about the disease. The more people who speak up about their experiences with seizures and epilepsy, the more others become aware of the condition, its challenges, and how to become better allies to people living with disabilities. We encourage everyone in the epilepsy community to share their story through our eJourney online blog.
The next time someone has questions for you about epilepsy, direct them to educational resources that can provide them with basic knowledge about the disease.
Wednesday: Sexual Health and Epilepsy
Living with epilepsy and its treatment may affect one’s sexual and reproductive health. Although each person with epilepsy is different, there are some common questions and concerns among different age groups and genders about epilepsy and sexual health.
For women living with epilepsy, it is important to know about how anti-seizure medications may affect birth control, as well as if seizures can affect pregnancy. Hormonal changes may also influence seizures and their severity from puberty through menopause.
For men, epilepsy has been shown to affect sexual function and fertility. This can be a result of changes in libido from anti-seizure medications, changes in hormones, and can even be caused by struggles with mental health that affect confidence and self-esteem.
If you are a person living with epilepsy who has questions about their reproductive and sexual health, always reach out to your healthcare team to talk it over. Often, changes can be made to help you feel more comfortable and improve your sexual wellness.
Thursday: Improving Mental Health and Wellness
Whether you’re newly diagnosed or trying to manage a routine, it can be hard to find time to focus on mental health. We all need to take care of ourselves — to manage individual health problems and get or stay healthy and happy.
Many people with epilepsy experience disagreeable changes in their emotions, and the link between mood disorders and epilepsy has been observed for more than 2,000 years.
There are several resources available to help people with epilepsy manage their mental health-related symptoms. The Managing Epilepsy Well Network (MEW) is a team of people who care about the health of people with epilepsy, their friends and family, and their caregivers. MEW Network Members come from U.S. universities, community-based organizations, and the Centers for Disease Control and Prevention (CDC). Network Members work together to promote epilepsy self-management research and improve the quality of life for people with epilepsy.
In addition to the programs offered through the MEW Network, the Epilepsy Foundation has a number of wellness toolkits that can help you identify emotional health issues, provide a general overview of your wellness, help you focus on diet and nutrition, and more.
Friday: Receiving Care for Epilepsy in Rural Areas
Epilepsy is common – 1 in 26 people in the United States will be diagnosed with epilepsy in their lifetime. However, it is not commonly talked about.
According to the Rural Health Information Hub, “A 2014 CDC-funded study looking at all-age samples in rural southeast Kansas used a unique approach and found that epilepsy prevalence was on the higher end of comparable national estimates, finding 17 cases per 1,000 population compared to about 10 cases per 1,000 population in urban areas.”
In addition to the prevalence of epilepsy in rural areas, significantly more Black than White people with epilepsy reside in underserved rural areas. This makes it even more difficult for these specific populations to receive proper care. People with epilepsy living in rural communities are also more likely to have other medical issues such as asthma, cardiovascular disease, diabetes, and Alzheimer’s disease.
If you are a person with epilepsy living in a rural area, our Seizure First Aid program can help spread awareness and education in your area. We have posters available in a variety of languages to help spread the word. Share with your local community centers to make your community a safer place. You can also check out a recent webinar about rural epilepsy care to learn more about navigating the challenges of receiving care for seizures in rural areas.
Saturday: Improving Accessibility
No matter where you’re located, the Epilepsy Foundation is here for you. We encourage you to connect to our 24/7 Helpline via phone, at 800-332-1000, via our online form, or by email. You can also reach us en Español at 1-866-748-8008.
In addition to our Helpline, the Epilepsy Foundation and our dedicated volunteers work to advocate for the community on a daily basis. Our advocacy priorities include:
- Ensuring access to quality healthcare
- Ending epilepsy-related discrimination and protecting the rights of people with disabilities
- Promoting public health, education and awareness about the epilepsies
- Encouraging the development of new therapies and research to gain a better understanding of the epilepsies
You can be a voice to create state and federal change. Become an epilepsy advocate.
Sunday: Focusing on Food and Nutrition
For people who may not be able to control their epilepsy with anti-seizure medication alone, a change in diet can sometimes help decrease seizure frequency.
Some people may try a special diet called the ketogenic diet, one of the dietary therapies that may be recommended by their healthcare team to improve seizure control.
But eating healthy doesn’t mean you have to be on a special diet. People with epilepsy have long reported that some foods may aggravate seizures or that going long periods of time without eating or “not eating well” can lead to poor seizure control.
The importance of diet has been reinforced in many ways. Anecdotal reports and some research show that improving the nutritional content of a person’s diet can improve seizure control and well-being in some people.
We also recognize that maintaining a healthy diet may be difficult for some members of the epilepsy community due to food insecurity. Feeding America has collaborated with the Epilepsy Foundation to raise awareness about epilepsy and its connection to food insecurity through their Hunger Health Equity health brief.
Public health plays a critical role in the lives of people with epilepsy. By promoting awareness, education, and access to healthcare services, public health efforts can help individuals with epilepsy manage their condition and lead healthier lives. In addition, public health programs can help reduce discrimination and enhance the overall quality of life for those living with this condition.
Thometta Cozart MS, MPH, CHES, CPH