Why I Participate in Research

Decades ago, when I received my master’s degree as a nursing instructor, I taught my students about the importance of listening to patients and taking good notes. I didn’t realize how important these lessons would become in my own life—until I was diagnosed with epilepsy. As a patient, I knew I had to work with my doctor to find the best treatment for me. When the standard anti-­‐epilepsy treatments failed to control my seizures, I was referred to an epileptologist. He is always on the lookout for new treatments, and I’m willing to try anything that might help me gain better seizure control. With his help, I’ve enrolled in several clinical trials.

Participating in a clinical trial takes commitment. Without my notes and feedback, researchers can’t know how effective the treatment is or what side effects I may have experienced. I believe that if patients, doctors and researchers work together, seizure treatment will progress toward better control. While I want to do everything that I can in my own treatment, I also know that what researchers learn from my participation can help others living with epilepsy. And I can feel good about that.

Debbie C., Retired Nursing Instructor and Epilepsy Advocate

Originally printed in EpilepsyAdvocate, Spring 2015