Personal Epilepsy Experience Inspires International Epilepsy Advocacy

Epilepsy is more common than most people realize. Each year at least 150,000 people are diagnosed with epilepsy. Worldwide, approximately 65 million people live with epilepsy. While these numbers may be shocking to those unfamiliar with the frequency of epilepsy, there is a region in East Africa where the incidence of epilepsy is significantly higher with some estimates putting the rate of occurrence close to 10 times more than in the United States.

This week on Seizing Life ® in honor of International Epilepsy Day on February 14th we speak with Julianna Shinnick about the state of epilepsy in the Mahenge region of Tanzania in East Africa. After living with epilepsy for years, Julianna underwent brain surgery at the age of 19. Her experience inspired her to become involved in the lives of those with epilepsy in Tanzania. Julianna tells us how she first learned of the situation in Tanzania and why she felt compelled to get involved. She outlines the theories that may explain the high rate of epilepsy in the Mahenge region, provides insight into the deep societal stigma entrenched in the local community, and reveals the many challenges of accessing quality epilepsy care and medications in Tanzania. Julianna also discusses several of the initiatives in which she has been involved since 2014, explains why she is encouraged by the progress that has been made, and offers ideas about what can be done to improve the lives of those with epilepsy in Tanzania.

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