I was heartened by journalist Tallulah Brown Van Zee’s Washington Post story last week. Ms. Brown-Van Zee has had epilepsy for over 20 years. Her experience of living with uncontrollable seizures inspired her to write about 11-year-old Luca, who also has epilepsy. Luca’s seizures are triggered by lack of sleep or flashing lights.
Although he’s been seizure-free for over one year, Luca’s parents worry if they see him staring off into space while watching television or taking a long car ride. The journalist described hearing them ask, “are you okay” multiple times during the day she shadowed Luca’s family. Eventually, Luca shot back “yes, why are you asking?” While this could be seen as a typical snarky preteen response, I believe the subtext is more profound. Luca told the journalist that his parents’ regular expressions of concern left him longing to be treated “normally.”
As someone who managed uncontrollable seizures for decades, Luca’s desire to fit in resonates loudly with me. I had many firsthand experiences where others used my epilepsy to define my abilities and aptitudes. There was the local health club that banned me from their premises, after I had a focal impaired awareness seizure (also known as complex partial seizures) while working out. There was the former employer who launched an unfair disciplinary complaint against me after I had a tonic clonic (also known as grand mal) seizure at work. There were family members who questioned my ability to ride a bicycle because they were worried I could have a seizure while riding. Although I understand my family members’ concern, nobody with a chronic health condition wants to be defined by it. I pushed back against others’ tendencies to do that when I still had seizures, experiences I describe in my memoir, Seizing Control.
As the parent of two teenagers who both have a chronic condition, I can relate to anxiety levels shooting up when we see our children in potentially precarious situations involving their well being. Parental instincts naturally kick into overdrive when we witness our babies struggling to stay safe and overcome a health challenge. Now ages 17 and 19, I consider both my kids to be young adults. While it’s not easy, I’ve learned to step back and let them take the lead when dealing with doctors and developing treatment plans. But I feel my heart sinking and my stress rising when those plans seem slow or imperfect.
Although I empathize with Luca’s parents, I relate even more to Luca, and his frustration over being treated differently due to his epilepsy, especially when he’s been seizure-free for a year. In 2016, I decided to get my first driver’s license when I’d been seizure-free the required six months. I had two brain surgeries in 2014 and my neurologist advised me that this was a safe choice. “That sounds risky. I don’t know if I would do that,” my father said when I told him my plan. I was almost 50, so unlike Luca, I could disregard his advice. I’ve had my license for almost ten years, and have been seizure-free for over a decade, so I made the right choice.
In her article, Ms. Brown-Van Zee describes Luca’s isolation, as she was the first person he met who also had epilepsy. She also noted the lack of National Institute of Health funding allocated to epilepsy compared to other neurological disorders. For example, Alzheimer’s disease impacts twice as many people as the 3.4 million people who have epilepsy but received 18 times the amount of funding in 2025. Some advocates believe this disparity is due to epilepsy’s stigmatization. The lack of funding, Luca’s isolation, and stigmas related to epilepsy could all be addressed by H.R. 1189, the National Plan for Epilepsies Act, which is under consideration by the House of Representatives. If passed by Congress and signed into law by the President, the act would direct the federal government to develop a National Epilepsy Plan to prevent, diagnose, treat, and cure the epilepsies and improve the well-being of people with epilepsy and their families. A National Plan would also bring increased attention, support, and resources to the epilepsy community.
When I wrote my July Substack, the Senate Health Committee was about to consider the National Plan for Epilepsies Act. Since then, the committee approved the bill, which was unanimously passed by the full Senate on August 4th. On September 15th the House Energy & Commerce Subcommittee on Health held a hearing on H.R. 1189 and the bill is working its way through the committee process. The Committee needs to schedule a “markup” session to officially debate, potentially amend, and vote on HR 1189 before it can advance to the full House. These may feel like baby steps, but they’re bringing the National Epilepsy Plan closer to becoming a reality. Here are the next steps to take, to keep the process moving forward:
- Go to the Epilepsy Action Networks Voter Voice page and urge your Congressional Representative to vote yes on H.R. 1189 when it comes to the full House for a vote. Just fill in your name, email, and home address, and the site will auto-generate a letter to your Senator and Representative, which you can personalize. Then hit the purple “send” button at the bottom of the page.
- Check the list of Health Subcommittee members. If one of them is your Representative, urge them to get the bill through the “mark up” session, and advance it to the House floor for a full vote.
- Stay informed about the process by attending the next virtual Epilepsies Action Network stakeholder meeting next week on September 30th at 4:00. Registration here.
In July I predicted I’d be blogging about the National Epilepsy Plan again, and I’m sure this won’t be the last time, either. The Plan has made good progress but there’s clearly more to be done. Let’s use our voices to put the National Plan for Epilepsy in place.
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