Dear Chairmen Lewis and Gordon, Vice Chairs, Jehlen and Ayers, and Members of the Joint Committee on Education:
I am writing to urge you to support House Bill 635, The Seizure-Safe Schools Act, which would require that public schools have at least one staff member who is trained to administer a seizure rescue medication and a manual dose of the vagus nerve stimulator, if a student has a seizure at school. House Bill 635 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 a 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.
I was diagnosed with epilepsy at age six and I had uncontrollable focal impaired awareness seizures (a.k.a. complex partial seizures) until I had brain surgeries at age 47. I have vivid memories of the distress and embarrassment I felt when I had seizures at school. A seizure is triggered by misfiring neurons, which cause the person to lose full control over their bodies. Symptoms present differently in people with epilepsy. When I had seizures, I smacked my lips, moaned out loud, and demanded to know what time it was, so I could ground myself. I was briefly unaware of my surroundings, which was clear to those around me. My seizures typically ended within a few minutes, and didn’t require medical attention. But of course, they were disconcerting to watch. Witnessing a person not in control of their bodies is scary, so it’s not surprising that I had teachers who wanted to unnecessarily call ambulances, which only further disrupted the day and drew more negative attention to my condition.
Today, children with epilepsy can sometimes be treated with emergency rescue medications or vagus nerve stimulation that will halt the seizure activity. Stopping the seizure maintains the child’s health and safety, as the longer a seizure goes on, the bigger the impact on the patient. Some seizures can be fatal. Terminating the seizure is also the best action step for maintaining the calm environment required in a classroom, especially during a medical emergency. I can’t stress the importance of trained school staff when it comes to appropriate treatment of/reaction to a seizure during the school day.
The 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 teaching staff about effective medical responses to seizures, the bill will also decrease students’ and staff’s fear of them and increase their awareness about epilepsy. Please support the Seizure Safe Schools Act, House Bill 635.
Respectfully Submitted,
Laura Beretsky