By Amber Kaiser
Recently, I wrote an article about the concept of a Seizure Action Plan (SAP) and how it is helpful to people and families with epilepsy. An SAP resource can be used to guide other people on what to do when you or someone you love has a seizure; it’s helpful in public places you frequent like schools and even the workplace if you feel comfortable enough to share. The availability of an official Seizure Action Plan template is still new to the epilepsy community and not many people know about it.
In this article, I help spread the word about the SAP concept further and introduce you to the Seizure Action Plan Coalition (SAPC) and the epilepsy organizations that created and made this coalition happen! Epilepsy Alliance America (EAA) now runs the SACP, and Lisa Gallipoli, EAA’s Chief Operating Officer, and I connected again to share more details about the SACP and how EAA got involved with the coalition.
The Dravet Syndrome Foundation (DSF), the Lennox-Gastaut (LGS) Foundation and the Tuberous Sclerosis Complex (TSC) Alliance established the Seizure Action Plan Coalition (SAPC) just a few years ago in August 2020 to “educate patient and caregivers populations, as well as healthcare professionals and the lay-community, on seizure rescue education and the importance of personalized seizure action plans.”
In the Fall of 2022, the Governing Organizations of the coalition approached Epilepsy Alliance America to be the new Managing Entity of the coalition. Epilepsy Alliance America became the managing organization of the Seizure Action Plan Coalition on January 1, 2023. Epilepsy Alliance America is committed to continuing this important work and expanding the reach and impact of the coalition.
A Seizure Action Plan includes health and medical information that helps others recognize seizures and take appropriate steps to keep the person safe from injury or damage caused by prolonged seizures. It is intended to help people and families with epilepsy educate others about what to do if they have a seizure in their presence and make the experience safer for all people involved. I also believe choosing to share an SAP in a safe environment is a natural way to support epilepsy awareness and help us end the stigma together.
Organizations can become members of the SAPC by agreeing to be an Awareness Partner with a commitment to spreading the word about Seizure Action Plans and Seizure First Aid. The SAPC now has more than 60 partners including Neureka!
The SAPC also started the first Seizure Action Plan Awareness Week in 2021 and we are spreading the word for the 4th Annual SAP Awareness Week next week, February 12-19, 2024. You can help by sharing the messages on social media and consider talking with your friends or colleagues who may know any epilepsy support groups or seizure support related organizations that would like to learn about joining the SAPC community!
EAA helps kick off SAP Awareness Week, February 12-19, 2024, by launching a social media campaign and website designed to highlight the need for people with epilepsy, their caregivers and healthcare providers to develop detailed plans for action when a seizure occurs. The social media campaign incorporates the hashtag #SAPAW2024 and urges people to learn more at SeizureActionPlans.org.
“According to the Centers for Disease Control and Prevention, approximately 3.5 million Americans have epilepsy, which is roughly 3 million adults and 470,000 children and teens,” said Lisa Gallipoli, COO of Epilepsy Alliance America. “About one-third of people with epilepsy do not achieve adequate control of their seizures with current treatments, making a seizure action plan an important management tool. This awareness week is critical for educating people of all ages in the epilepsy community about this important issue.”
In a recent study, only 30% of adult patients and 45% of pediatric patients responded that they have a seizure action plan. The plan can offer more control to patients and caregivers by providing consistent, patient-specific guidance regarding seizure management. It also educates and empowers people to know what to do in the event of a seizure, such as by defining the appropriateness of watchful waiting, when to intervene with at-home rescue medications, when to call 911 or go to the hospital, and much more.
The SAPC website has tools and resources from its awareness partners for individuals with epilepsy and their families. Newly added to the site are resources for Seizure Response and First Aid including downloadable posters in multiple languages that can be posted so that individuals know how to respond in the event someone has a seizure.