Over the past four decades, Dr. H. Steve White has devoted his career to epilepsy research, with a focus on understanding what causes seizures and ways to mitigate them. Currently the Department of Pharmacy chair at University of Washington, White also served on the faculty at the University of Utah for 30 years and was CURE’s research director from 2011 to 2015. In 2010, his interest in epilepsy took a personal turn when he experienced his first seizure. Here, White shares how his new perspective as a patient has shaped his work and his hopes for the future of epilepsy research.
You’ve spent nearly 40 years researching epilepsy. What initially drew you to this field of study?
When I began graduate school in 1980, I knew that I wanted to study neuroscience, but I knew very little about epilepsy. However, I soon realized that epilepsy as a field of study was extremely interesting to me, because it provided a window into the complexity of the brain. At the time, the community was learning more and more about the neurobiology of epilepsy and how seizures start and spread. I realized quickly that trying to understand epilepsy at a neurobiological level was both fascinating and important work. Like many graduate students, my career was shaped early on by mentor, Dr. Dixon Woodbury who was passionate about his work to advance a greater understanding of the mechanisms of action of anti-seizure drugs and the role of the non-neuronal glial cell in seizure onset and progression. Dr. Woodbury was a strong advocate for his students. At every meeting we attended, he would take me and his other students under his wing and introduce us to the greater epilepsy community. The more scientists and clinicians I met, the more I began to appreciate the passion they had for their work and their patients.
You’ve played a role in the development of several new antiseizure drugs and served in multiple leadership roles throughout your career. What are your proudest achievements?
First, I want to acknowledge that any achievements that I may have enjoyed have been possible because of the team of dedicated individuals I’ve been fortunate to work with over the years. Since 1993, the Anticonvulsant Drug Development Program at the University of Utah has touched all of the new seizure drugs on the market in some way. To know that this work contributed to the clinical advancement of several new anti-seizure drugs has been extremely rewarding for the entire team. On a personal note, I think a lot about how our work together over the years has contributed to a better quality of life and seizure control for people living with epilepsy. Being the beneficiary of one of the antiseizure drugs first screened by the University of Utah Program, I am reminded twice daily how modern science and drug discovery can change lives by bringing new therapies to the market place. In addition, the team at Utah has been able to advance new animal models for drug screening; work that has impacted how the National Institute of Neurological Disorders Epilepsy Therapeutics Screening Program evaluates new drugs. I am so pleased to see how this work continues today under the leadership of Karen Wilcox. I am also so proud of my work with CURE, particularly the Infantile Spasms and Post-Traumatic Epilepsy Initiatives. I have over the years been humbled by the support from the entire CURE family not only for me but for all people with epilepsy and their families.
After a generalized tonic-clonic seizure in 2010, you were eventually diagnosed with focal epilepsy. How has your diagnosis impacted your personal and professional life?
In that moment, I got my first glimpse into what the lives of 60 million people living with epilepsy must be like on a daily basis. I can honestly say that there’s not a day that goes by that I don’t think about it, and how it’s impacted me and my family. I remember waking up in the emergency department and being told that I had had a seizure but not to worry because “everyone gets their first seizure for free.” Even though I tried to rationalize the seizure on the basis of sleep deprivation and stress I knew enough about the disease state to know that no one gets any seizure for free and that there was likely an underlying cause that could not be so easily dismissed. If I have ever wanted to be wrong, it was that night. Unfortunately, shortly after an MRI the next morning, I found myself meeting with the Chief of Neurosurgery at the University of Utah discussing neurosurgery to remove an unidentified mass that the MRI had identified in my brain. When the pathology report suggested that my tumor was a low-grade nonmalignant brain tumor, I realized that I was very fortunate to have incredible access to the healthcare system; the best doctors and health care team at a time when I needed it. Something that I fear doesn’t exist for a large percentage of people faced with a similar situation.
You were fortunate to find a treatment that has helped you control your focal seizures. How do you continue to manage your epilepsy day to day?
Eighteen months after the neurosurgery, I started having focal events that were becoming more frequent and longer in duration. In my mind, I realized they were probably focal seizures and I had prepared myself for the diagnosis. No matter how much I had prepared myself, hearing the words “focal epilepsy” was when the full irony of the situation hit home. To think that I now have a diagnosis for a disease that I had studied my entire career and that I was taking an antiseizure drug that was first screened by the team that I directed during my tenure at the University of Utah has certainly personalized how important science is and that we cannot stop seeking better treatments for this disease.
You publicly announced your epilepsy diagnosis at the American Epilepsy Society Conference last year. What inspired you to share this news with the community?
It was a decision that took me years to make. I remember a conversation with Susan Axelrod and Dan Lowenstein a number of years earlier about how the landscape for epilepsy research might change if those of us with the disease were able to speak out and take ownership. Easier said than done, I told myself. I like many others felt almost paralyzed by the stigma that still exists around epilepsy. I worried about how my friends and colleagues would react.
My decision to go public slowly evolved over the last two years. The last two summers I’ve been fortunate to travel with a group of 20 to 25 pharmacy students to Ghana on a Global Brigades Medical Mission where we interviewed a number of people with epilepsy and their caregivers in an effort to understand their needs and how the 85% treatment gap was affecting their access to healthcare and medications. I wanted to share my story thinking that in some way it might help ease their pain and anxiety, but I could not find my voice. Long story short, I finally figured out that I could no longer sit silent. I have found great solace in being able to speak openly about what life is like with epilepsy. The diagnosis no longer controls me, I control it by being open with friends, colleagues and students and there is no longer a reason for me to hide. I hope that my disclosure can in some small way help others. I’ve been very lucky, and I hope that my story can drive science and advocacy forward to ultimately help others.
After I shared my story at AES, I was moved by the level of support I received. People kept coming up to me to tell me that they or a child had been personally affected by epilepsy. I couldn’t think a better place to have had that conversation than with the CURE family present. I will always cherish the warmth that I felt that night and I will be eternally grateful for the support that was shared with me and my wife Kathryn that night.
What are your hopes for the future of epilepsy research?
If I have one big hope, I don’t want to be standing here 20 years from now and still not have a cure or a treatment for those patients with treatment resistant epilepsy. My hope is that we can use the knowledge of an ever-evolving science to finally find that transformative therapy that will someday alter or prevent the development of epilepsy in the susceptible individual. To do that, we need to all be strong advocates for epilepsy research and provide assurance that it is OK to talk about epilepsy.