Purple Day, also known as Epilepsy Awareness Day, was established in 2008 by Cassidy Megan. At the time, she was nine years old, and she was determined to connect people with epilepsy to each other and launch a global movement to increase epilepsy awareness. Eighteen years later, Purple Day is an international phenomenon. Every March 26th, people around the world wear purple and host events to increase epilepsy awareness. This Purple Day is also the perfect occasion to promote the National Plan for Epilepsy Act (S. 494/H.R. 1189).
If passed, the National Plan is a bill that will lead to federal investment in epilepsy, providing transformative resources for everyone living with, affected by or working with epilepsy. A National Plan will reduce epilepsy-related mortalities, improve epilepsy detection, diagnosis, prevention, and treatment, increase epilepsy awareness, and expand the scope of epilepsy research. Alzheimer’s, Autism, Parkinson’s, and ALS all have National Plans. Epilepsy does not. Based on the epilepsy-related news I regularly follow I know this is problematic.
Last week, Newsweek ran a short story about a woman with temporal lobe epilepsy whose condition was misdiagnosed. For two decades, doctors treated the sudden waves of fear that disrupted her relationships, work and daily life as symptoms of major depressive disorder. In fact, those fear waves were focal impaired awareness seizures (formerly known as complex partials), which originated in her temporal lobe. Like me, this woman had temporal lobe epilepsy, but in her case the doctors didn’t realize it. Rather than prescribing anti-seizure medications, her practitioners treated her seizures with anti-depressants, benzodiazepines, and therapy. As somebody who used to have similar seizures, I can appreciate the confusion. The racing sensations that pierced my gut certainly felt scary. But neurologically induced fear waves are a different beast from panic attacks. When the woman’s so-called “panic” episodes worsened, her doctors finally ordered an inpatient video EEG, which showed visible temporal lobe epilepsy symptoms.
Newsweek didn’t disclose the woman’s name or location, only that she is 46 years old. She’s same age as I was when I decided to go ahead with a temporal lobectomy to treat my uncontrollable seizures. At that point, I’d managed them for over four decades. While this journey was extremely challenging, I’d say the woman featured in the Newsweek story had an even more difficult recovery path. Although I couldn’t get my seizures under control until I had two brain surgeries (a journey I describe in my book, Seizing Control), I always knew what I was dealing with, which is critical to appropriate treatment.
After twenty years, the woman received the correct diagnosis, and her medications were adjusted to target focal impaired awareness seizures, which have decreased. She was also referred for a neurosurgical evaluation. The Newsweek story cited Dr. Samuel Cholette‑Tétrault, who noted “Patients with epilepsy are approximately five times more likely to have comorbid psychiatric disorders, which may bias clinicians toward attributing symptoms to anxiety or mood disorders.” Had she’d been diagnosed correctly 20 years ago, she might be seizure-free by now.
The woman’s story is a clear example of why passing the National Plan for Epilepsy Act (S. 494/H.R. 1189) is so important. The act would ensure that the federal government oversee critical initiatives, like coordinating epilepsy research and services, soliciting comments and considering consensus recommendations from collaborations in the epilepsy community, and carrying out an annual assessment of the nation’s progress on epilepsy. This would ultimately result in several positive impacts on people with epilepsy including earlier diagnosis, better treatments, expanded access to specialized care, and increased epilepsy awareness. Were this act in place twenty years ago, I suspect there’s a good chance that the woman in the Newsweek story would have had access to neurologists that were better trained about epilepsy symptoms, who could have identified her diagnosis more quickly. Then she could have avoided the hell-scape of an ineffective, incorrect 20-year treatment plan.
The National Plan for Epilepsy Act (S. 494/H.R. 1189) will certainly decrease the number of stories like this one. Cosponsored by Congressional Epilepsy Caucus Co-chairs, Senators Eric Schmitt (R-MO) and Amy Klobuchar (D-MN) and Representatives Jim Costa (D-CA-21) and Greg Murphy, MD (R-NC-03), the act was reintroduced in December and has bipartisan support in both congressional chambers. Amy Klobuchar is stepping down to run for governor and election season is almost upon us. These factors mean it’s critical to get the act passed as soon as possible. Now is the time to urge congress to cosponsor and pass the bill.
Please take this action step: Click here to ask your elected officials to support and cosponsor the National Plan for Epilepsy Act. (If your elected official is already a sponsor, you can send them a thank-you message instead.) The site uses the VoterVoice tool to identify your Congressional members in both the House and Senate and provides a letter template. You can personalize a message by sharing your story with each of them and send the message in just a few clicks. Let’s do what we can do to get this act passed!
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