Abstracts

This abstract has been invited to present during the Broadening Representation Inclusion and Diversity by Growing Equity (BRIDGE) poster session

Rationale: Of the 3.4 million people in the United States living with epilepsy, nearly 500,000 are youth under the age of 17. Epilepsy does not discriminate and anyone with a brain could develop epilepsy over the course of their lifetime. However, some individuals with epilepsy from some racial and ethnic populations and other unique populations do experience some additional challenges managing their seizures. Of the 25,000 African Americans who are diagnosed with epilepsy each year, many don’t disclose their diagnosis and lack support. Additionally, youth living with epilepsy have concerns regarding being labeled as sickly and being socially isolated by their peers, which contributes to increase stigma.

Methods: In collaboration with a national historically Black Greek-letter sorority and African American youth living with epilepsy who authored comic books about their epilepsy diagnosis, three virtual sessions were planned targeting youth discuss managing epilepsy and self-advocacy among females and teens of color living with epilepsy. The comic books highlighting their epilepsy journeys were read during the virtual sessions to increase the health literacy of the youth and encourage the engagement of the youth during the sessions. Youth were offered the comic books virtually or shipped hard copies of the books in advance of the sessions. The youth living with epilepsy explained their reasons for sharing their diagnosis with others and then answered questions from youth, parents, caregivers, and guardians during the virtual sessions. Existing resources, including Seizure First Aid Trainings and volunteer opportunities through affiliates, were offered to participants at the end of each session.

Results: From July to November 2021, nearly 500 comic books about youth living with epilepsy were shipped to African American youth in Florida, Georgia and South Carolia to participate in the Read Along virtual sessions. More than 300 individuals participated in the three virtual sessions. According to the post-event surveys, most of the participants of the virtual sessions became more aware of epilepsy disparities among the African American youth and requested additional information to address epilepsy disparities in their local communities.

Conclusions: Engaging and empowering youth of color living with epilepsy in awareness campaigns effectively addresses stigma. The distribution of comic books featuring youth of color living with epilepsy successfully increased the awareness of epilepsy disparities among minority youth.

Funding: This work was made possible with funding from Eisai, a pharmaceutical company, and in partnership of the Southeastern Region of Zeta Phi Beta Sorority, Inc. The contents of this abstract and project are solely the responsibility of the authors and do not necessarily represent the views of Eisai and/or Zeta Phi Beta Sorority, Inc.