Seizure Safe Schools

Since federal funding cuts are slashing national epilepsy research and support programs, I’m applying the think global act local motto to my words and activities these days. There is a lot more to be hopeful about locally. In my home state of Massachusetts, the legislature’s Joint Committee on Education is considering House Bill 635, The Seizure-Safe Schools Act. The Act requires that all Massachusetts public schools have at least one staff member who is trained to administer a seizure rescue medication and/or a manual dose of noninvasive vagus nerve stimulation if a student has a seizure at school.

The Seizure-Safe Schools Act also contains important guardrails that keep students with epilepsy safe at school, including requiring that their families collaborate with staff to develop a doctor-approved seizure action plan for how to respond if their child has a seizure at school. The Act also requires epilepsy awareness training for staff and students using a curriculum consistent with Epilepsy Foundation of America guidelines.

As somebody who had seizures in class during middle and high school, I am both amazed and appalled when I read about safe seizure legislation. I’m appalled that schools have only recently begun to require staff training for treating students with epilepsy, and it’s still not required everywhere. As of now, only 24 states have similar legislation to protect students with epilepsy. (Check this link to see whether your state is one of them.)  If Massachusetts passes the Seizure-Safe Schools Act, half the country will have basic protection in place for schoolchildren with epilepsy.

I’m amazed by the advances in medication and technology. When I was child, immediate response treatments like non-invasive vagus nerve stimulation and seizure rescue medications weren’t available. School staff may have had input from families about their students’ epilepsy, but there was no required training or predetermined action plan. Staff members were largely on their own, if their students had seizures in the school building.

I recall a focal impaired awareness seizure (aka a complex partial seizure) I had during tenth grade gym class. The episode began with tingling sensations in my belly, as I was playing tennis with my classmate. Marcy knew I had epilepsy. “I’m having a seizure,” I informed her, panic waves rising from my stomach, and spreading across my face. I was more alarmed by the setting than the seizure. I blanked out as Marcy walked toward my side of the net. Later, she told me that our gym teacher freaked out, put the kibosh on the others’ tennis games, and circled around me like a headless chicken. As the entire class watched, she demanded somebody get the principal, nurse, and an ambulance. My teacher’s response only drew more of my peers’ attention and made a bigger spectacle of me. In the end I was sent to the nurse’s office. Thankfully, she figured out that my focal impaired awareness seizure only required some down time, not a hospital visit.

Had a bill like HR 635 been in place when I was in tenth grade, the gym teacher may not have had access to rescue medications or vagus nerve stimulators, but she would have been more aware about how to appropriately respond to my seizure. She probably could have kept calm and taken steps that didn’t further disrupt the day and draw more negative attention to my condition. This wretched gym class seizure was one of many I had during school, which are included in my memoir, Seizing Control. My story is one of countless school children’s that showcases the importance of trained school staff when it comes to appropriate treatment of/reaction to a seizure during the school day.

Massachusetts’ Seizure Safe Schools Act will go a long way toward ensuring that children with epilepsy are safe at school when they have seizures. In addition to training staff in effective medical responses to seizures, the bill will also decrease students’ and staff’s fear of them and increase their awareness about epilepsy. I emailed a written testimony about this bill’s importance to my state senator, Patricia Jehlen and asked to meet with her in person. I also asked the Epilepsy Foundation of New England to let me know when the Massachusetts Joint Committee on Education sets a date to hear live testimony on the bill. I plan to get to the State House with bells and whistles and stories, to do my part to get the Seizure Safe Schools Act passed.