Seizing Life

Today on Seizing Life, we’re taking a deep dive into seizures with Dr. Michael Smith, Senior Attending Neurologist and Director of the Rush Epilepsy Center in Chicago.

Alec Beauseigneur-Jimenez was injured in a training accident in May 2015, causing extensive damage to his hand and a concussion. The medical team’s focus was on the severe injury to his right hand, prompting multiple surgeries. However little attention was paid to the concussion.

Our guest this week is mother and advocate, Sherri Brady. Her daughter, Lauren was diagnosed with Rett Syndrome, a rare disorder that can have devastating impacts, including seizures. For the past 20 years, Sherri has gathered the tools she needs to advocate for Lauren’s care in a biased system.

As a child growing up with epilepsy, Christin Godale experienced stigma and exclusion by her peers, driving her to hide her condition from friends and classmates. But a neurologist’s encouragement sparked Christin’s interest in understanding her own epilepsy and eventually brought her to acceptance, advocacy, and the pursuit of her PhD in neuroscience with the ultimate the goal of becoming an epilepsy researcher.

Caroline Pratt was diagnosed with epilepsy at 8 years old.  Now 17, Caroline has battled seizures and the physical and emotional impacts. But with Caroline now attending college and living away from home for the first time, both parent and child have had to make concessions and changes within their relationship.

In this episode of Seizing Life, explore the psychological impacts of epilepsy that can result in mood disorders, like depression and anxiety with Dr. Kanner, Director of the International Comprehensive Epilepsy Center and Chief of Epilepsy Division at the University of Miami, Miller School of Medicine.

While this app comes from humble beginnings, Seizure Tracker now provides patients, families, and physicians the ability to track, understand, and treat seizures, as well as tools to manage treatment regimens and document medication side effects.

One in 26 Americans will develop epilepsy in their lifetimes and millions more will be touched by this devastating condition. While the diagnosis can be challenging there are people and groups who can provide support in many different ways.  The trick is how to find them.

In these challenging times of the COVID-19 pandemic, we are all trying to adjust to a “new normal”.  But for individuals, caregivers, and families battling epilepsy, current shelter-in-place guidelines bring additional challenges and concerns.

On this episode of Seizing Life, Dr. Vicky Whittemore, Program Director for Epilepsy and Epileptogenesis at NINDS and CURE Scientific Advisory Council member, explains how NINDS sets priorities, funds research, and collaborates with non-profits to move science forward in pursuit of new treatments for epilepsy.