Earlier this month, my blog acknowledged Epilepsy Awareness Month by showcasing some Epilepsy Warriors from around the country who raise money and awareness about the issue. The abundance of this month’s epilepsy-focused stories underscores the Epilepsy Warriors’ efforts and demonstrates the need for increased epilepsy research funding.
Every November, several states, cities, and towns officially declare November as Epilepsy Awareness month in their regions. This year’s locales include Wisconsin , where the Epilepsy Foundation of Wisconsin has organized a Walk to End Epilepsy every November for years. Now the state officially acknowledges the day.
Epilepsy Awareness Month also generated multiple stories about people like me who had intractable seizures that could only be controlled after brain surgery. There was Emily Hughes, a nurse from Louisville diagnosed with epilepsy at age eight. Her drug resistant seizures compelled her to opt for surgical removal of the seizure-triggering part of her brain, which required two separate procedures. Now she’s been seizure-free for over a decade. Her experience inspired her to study neuroscience, so she can help others in situations like her own.
In Florida, Bailey was diagnosed with epilepsy seven years ago, at age 11. After several rounds of unsuccessful drug regimens, doctors identified a lesion buried inside her brain, which was likely causing the seizures. Her drug resistant seizures were successfully treated with a lesionectomy last year. In addition to stopping her seizures, the surgery increased Bailey’s focus, confidence, and academic abilities; she graduated her senior year in the top 15% of her class. Most importantly, her seizure-freedom gave her an optimistic life lens: “I have no worries. I’m just able to enjoy my life,” Bailey says. “I feel very free.”
Nicole Phillips, a 29-year-old Arizona mom to three children was diagnosed with epilepsy as a teen. She had her seizures under control with meds for years, but they came back a few years ago. She couldn’t drive, and the seizures were so debilitating they interfered with her job and her ability to care for her children. This year, after surgically removing the seizure-sparking part of her brain, Nicole’s seizures finally stopped.
I appreciate the attention Epilepsy Awareness Month brings to the condition, and I relate to all three of these stories, as my medical journey had similar twists and turns. But not everybody’s epilepsy journey has a happy ending. Epilepsy Warrior Susan Branin of Tyler, Texas knows this. Her daughter, Micayla had uncontrollable seizures, despite two brain surgeries, and eventually died of Sudden Unexpected Death due to Epilepsy, or SUDEP in 2022 at age 21. Prior to her passing, Micayla was also an Epilepsy Warrior: In 2018, she established Raising Hope Together to increase epilepsy and SUDEP awareness. Similar to Epilepsy Warrior Debbie Pajares, whom I blogged about earlier this month, Micayla was compelled to increase awareness and advocate on others’ behalf. Since her daughter Micayla’s passing in 2022, Susan Branin is carrying the Epilepsy Warrior torch, sitting on Raising Hope Together’s Board, organizing annual fundraising events to increase awareness about epilepsy, and raise money to help families dealing with it.
Increased funding to research epilepsy cures and treatment is what will ensure that people with intractable seizures have stories with happy endings like Nicole’s, Emily’s, Bailey’s, and mine. Epilepsy Warriors like me and those described on my blog know this, which is why we do what we do.
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