JANELLE WAGNER ... In My Own Words

Janelle L. Wagner, Ph.D., is Assistant Professor of Pediatrics and Nursing at the Medical University of South Carolina. She is the first recipient of the William R. Turk, M.D., Pediatric Epilepsy Research Award. Her research study on Depression Screening in Youth with Epilepsy is supported by the Partnership for Pediatric Epilepsy Research.

My experience with epilepsy began as a teenager when I noticed my younger brother, Aaron, staring off and making odd mouth movements at the breakfast table. Aaron was diagnosed at age 10 with complex partial epilepsy. He went through some pretty dark times when he did not have much confidence in himself and experienced hopelessness.

Aaron was adamant about keeping his epilepsy a secret, so for years my family tried to cope with epilepsy without resources or much assistance from others. It was difficult for my parents to watch their son, not only have seizures, but feel so burdened, so defined by his epilepsy. As his older sister, I wanted to make life better for him somehow, to take away his burden. At different times, we all stared into the depths of helplessness. It can be pretty daunting. As a family, you have to find a way to live well with epilepsy and not be defined by epilepsy.

A temporal lobectomy as a young adult allowed Aaron freedom from seizures, but he continued to experience academic and life challenges that often encompass epilepsy, which is so much more than “just seizures.” However, Aaron persevered. He developed a strong will and determination to succeed. He graduated from college, married and started his own business. I think living with epilepsy gave Aaron a heart for others with disabilities and an appreciation beyond his years for the sanctity of life. Aaron became my hero and the inspiration for my career.

Based on my family’s personal journey with epilepsy, I chose a career where I could make a difference in the lives of children with epilepsy and their families, particularly in the area of coping with epilepsy. As a pediatric psychologist, my practice and research involves evidence based psychosocial and behavioral assessment and intervention for children with epilepsy. My research interests focus on models of psychosocial adjustment to pediatric epilepsy and development of a cognitive-behavioral intervention to enhance primary and secondary coping skills in youth with epilepsy and their parents. My colleagues and I have worked to enhance mental health services for youth with epilepsy at the Medical University of South Carolina.

As a junior faculty member, grant funding from the Epilepsy Foundation has been critical to my success as a researcher and provided a strong foundation for future funding. Through the Targeted Mood Initiative, we were able to examine a learned hopelessness model of depressive symptoms in youth. Our second study, funded by the Epilepsy Foundation, will look at development of a youth depression screening measure and facility of this tool to inform mental health referrals.

I am grateful to all of the families I have worked with, including my own, for what they have taught me about living with epilepsy. They have inspired my research. And I have found that, when appropriate, briefly sharing my personal experience with epilepsy affords me, in their eyes, much more credibility as a researcher and clinician. In some sense, I’ve been there, too.

IN MY OWN WORDS is a column featuring the voices of people affected by epilepsy.