For the 1 in 26 people living with epilepsy in the United States, fostering community and connection plays a vital role in improving their care and quality of life.
Epilepsy, a neurological disorder characterized by recurring, unprovoked seizures, is often burdened by stigma and misconceptions. Although epilepsy is common, affecting an estimated 3.4 million people according to the CDC, individuals with epilepsy frequently experience societal stigma. This stigma shows up in many ways that may keep people from feeling safe to talk about seizures or to seek help. However, education, support groups and resources, and personal storytelling are powerful tools in combating stigma, shifting perceptions, and reinforcing the message that no one has to face epilepsy alone.
For over 50 years, the Epilepsy Foundation of America has been at the forefront of promoting epilepsy awareness and understanding. The Epilepsy Foundation has recently updated its mission and vision statements to better align with its focus on community support. The new vision serves as a call to action, emphasizing the importance of community: “So no one faces epilepsy alone.”
“These statements acknowledge the challenges people with epilepsy may face while empowering them to navigate their individual journeys with knowledge and hope,” said Bernice Martin Lee, chief executive officer of the Epilepsy Foundation.
A valued community
The epilepsy community encompasses people from all walks of life, including adults and children, from the newly diagnosed to those who have lived with the disorder for decades, their caregivers, family members, and healthcare providers. Epilepsy knows no boundaries, affecting people of all genders, races, ethnic backgrounds, and socioeconomic backgrounds. In more than half of all cases, the cause is unknown.
One key initiative is its Seizure First Aid certification program, which equips people with the knowledge to recognize and respond to seizures. This training can make a life-saving difference and is recommended for anyone who knows, cares for, or works with individuals living with epilepsy.
The Epilepsy Foundation’s signature in-person event, the National Epilepsy Walk, was held march 15 in Washington, D.C. This event offers an opportunity to unite the epilepsy community, raise awareness, and show solidarity with members of the epilepsy community. Participants can connect with others, share their stories, and contribute to a collective effort to combat stigma and inspire change.
For continued community and connection, the Epilepsy Foundation encourages everyone to talk about epilepsy, share their story, participate in walks and awareness months, find their local Epilepsy Foundations, and more. For more information about epilepsy, please visit epilepsy.com. Together, we can create a world where no one faces epilepsy alone.
