By Amber Kaiser

There are many epilepsy support resources and epilepsy support groups and organizations that are designed to help people and adults who have epilepsy. One of the more recent programs I learned and wrote about was the Seizure Action Plan Coalition and their Seizure Action Plan (SAP) documents designed to help you create your own Seizure Action Plan (or for a loved one) which is a document you can give to people you feel comfortable with like your school or work so the people you see regularly will know what to do when you or your loved one has a seizure.

I also heard about for the first time and did some research on SMART (Self-Management for People with Epilepsy and a History of Negative Health Events), a program I discovered was originally developed by researchers at Case Western Reserve University to help adults with “sub-optimally controlled epilepsy, intended to enhance epilepsy self-management in rural/sub-rural populations.” The program is also designed to help veterans and people who are underinsured. Some hospitals may have it available and it’s led by both a nurse educator and peer educator. If you are interested in learning more and to see if it’s available with your healthcare provider, I recommend asking your doctor about it. After an initial in-person meeting, it is done with a trained nurse and peer educator in multiple scheduled virtual group conferences online. The purpose of the program includes helping adults with epilepsy “address the challenges imposed by stigmatization, stress and limited social support.”

In my research, I found The National Library of Medicine shows a study that was done with SMART just a few years ago in 2021, covering results, feedback and showing the topics in each session: “Engaging Stakeholders in the Refinement of an Evidence-Based Remotely-Delivered Epilepsy Self-Management Program for Rural Populations.” It looks like the themes and categories of the program are realistic and practical in the epilepsy community covering many categories including epilepsy stigma and stress; comorbid illnesses and memory challenges; medication side-effects and finding the right medication; employability and insurance coverage challenges; access to medications, transportations and healthcare; lack of information about epilepsy; and support like family and friends or care providers.

If you are interested in learning more about SMART, I highly recommend reading the study and talking with your doctor to see if it’s available with them. There is a lot of useful information and I’m sure you’ll see many ways that you can relate to other people who have done the program. Understandably, stress and epilepsy go hand-in-hand and they noted that “having a strong support system was viewed by PLWE (people living with epilepsy) as the most important facilitator to self-management of epilepsy” and developing a regular sleep schedule and managing anxiety were helpful in “reducing the stress of living with epilepsy.” Seizures triggered by stress and lack of sleep quality are common.

Especially if you have been recently diagnosed with epilepsy, consider looking into this and asking your healthcare provider if it’s available for you. It looks like it will educate you about epilepsy and seizures, provide you with practical and useful information and give you advice about how to make your life easier while adapting to living with epilepsy and helping you overcome the social stigma of epilepsy.