Iowa kids with epilepsy need our support

When Iowans think of epilepsy, we often envision someone who suffers with severe, public seizure episodes. However, epilepsy is a spectrum disease comprised of many diagnoses including an ever-growing number of rare forms. This means there are many different types of seizures and varying levels of seizure control.

My daughter, Brianna, is a great example of how epilepsy comes in various forms. Bri’s epilepsy diagnosis came after a time of not knowing how to help her with a tightening in the back of her throat causing a reflux and dry heaving. Not your typical first thought of seizure symptoms. As an ICU nurse with 20 years of experience, I had never seen seizures like Bri’s, but this opened my eyes to the unique nature of epilepsy diagnoses.

Thanks to an incredible team of doctors and working through four different medications, our family was able to establish an effective care plan to help Bri. We have continued to work with Bri in her care over the years and she has thrived becoming an active student and athlete. She participates in wrestling, soccer, high school dance team, and competition dance all while taking college classes at Kirkwood Community College as a Junior in High School.

Most people have no idea Bri has a seizure disorder as she rarely discusses it or lets others know she isn’t feeling well. That being said, her seizures happen throughout the day; causing quite a distraction to her school studies and how she feels. Bri describes her epilepsy as a constant irritation and sometimes feels scared when the sensation in her throat doesn’t go away. Her seizure medication provides amazing relief, but this does not entirely prevent seizures or having to miss school or her activities.

Luckily, our school district has worked with us to ensure Bri has the support she needs to thrive and stay safe while at school. This is not the case for every Iowa child with epilepsy. Around 4,400 Iowa children live with epilepsy and it is important they have all the resources they need to succeed just like Bri.

Sadly, many Iowa educators and school staff do not have the necessary training to respond to a seizure properly as the training for such situations is not required. This is why the Epilepsy Foundation of Iowa and advocates like me have been pushing the passage of Iowa’s Seizure Safe School Act (HF 795) which would greatly improve the care of students with seizures in our schools. The bill passed the Iowa House with overwhelming support last legislative session and just needs to pass the Iowa Senate in 2022. The bill requires school personnel to participate in an approved one-hour seizure recognition and first aid training every two years and for schools to have a seizure action plan on file for each student with a seizure disorder among other safety measures.

I am asking my friends and neighbors to contact your Iowa State Senator and ask them to pass Iowa’s Seizure Safe School Act (HF 795) to keep every Iowa child who experiences seizures while at school safe. This bill is a step in the right direction and will help ensure all Iowa kids who experience seizures have all the opportunities they deserve by proactively educating teachers and staff.

Jody Neuhaus is an ICU nurse with 20 years of experience who recently joined the Epilepsy Foundation of Iowa Board in order to challenge the status quo and advocate on behalf of kids like her daughter who live with epilepsy every day.