Ken's Story

When I was 13 years old, my family moved from the Chicago suburbs to a rural community near Galena, Illinois. This area is filled with small hills and so, near the start of my first winter there, I grabbed my sled and found the perfect hill. However, I don’t remember anything about sledding that day. What I do remember is waking up with paramedics looking down on me and telling me that I had a seizure. Confused, I was brought by ambulance to the hospital where I was diagnosed with epilepsy. Shortly thereafter, I had an appointment with a neurologist and began taking medication which, fortunately for me, has completely controlled my seizures ever since.

In my late 20s, I joined an international nonprofit organization and began more than two decades of travel to under-resourced countries and communities. My work involved addressing issues related to poverty in areas such as small business, financial services, agriculture, education, and community-based health care. While traveling, I would always remember to take my medication every morning and night. Yet, during the day, I did not think often enough about the people with epilepsy in the communities in which I was working.

That all changed in 2017 when I began a consulting assignment for the ROW Foundation, an organization that helps improve the lives of people living with epilepsy and associated psychiatric disorders in under-resourced areas of the world. Through my work with ROW, I learned that the epilepsy treatment gap in many of the countries I travel to is often 90% and higher. Beyond that, the consequences of untreated epilepsy are great – isolation, lack of education, and even physical assault or death. In many places, epilepsy is viewed as a spiritual problem or contagious, making people with epilepsy a perceived threat to their communities.

While having this information was a step in the right direction, the treatment gap finally got personal in November of 2017. I was in Rwanda on a consulting assignment unrelated to my work with ROW. I was scheduled to meet with two agriculture officers, but only one arrived. He was visibly shaken and told me that his colleague would not be joining us. I reassured him that it was no problem and that we could just do the meeting between us. He then told me his colleague had been killed the previous week. I was, of course, very saddened to hear this and immediately thought it may have been an automobile or motorcycle accident. To my shock, he told me that his colleague had epilepsy and was killed by his own community. This personal introduction to the devastating consequences of the treatment gap is something I think about almost every day now.

In May of 2019, I joined ROW Foundation as their Director of Global Programs. I am both honored and grateful to be involved with an organization that works to address untreated epilepsy and the psychiatric conditions that are often associated with it. In 2018, we provided over 63,000 “prescription months” of Roweepra®, a branded generic of levetiracetam, the most frequently prescribed antiepileptic drug in the U.S. For most, this is their first introduction to a means of controlling the seizures that have prevented them from an education, a livelihood, or even a sense of belonging in their own communities.

Story from the MyEpilepsyStory.org