As someone living with epilepsy, I know firsthand how challenging it can be to navigate not only the medical side of things, but also the social and financial barriers that come with it. But I also know how powerful advocacy can be—not just for yourself, but for an entire community. That’s why I’m sharing my journey and encouraging you to join me in supporting a healthier, more inclusive future for all Minnesotans impacted by epilepsy.
A Personal Journey to Self-Advocacy
For years, I struggled with seizures. I had been prescribed a dangerous dose of my anti-seizure medication, which made my seizures even harder to control and came with terrible side effects. It was a dark and difficult time, but by educating myself and advocating for my own care, I found a new epileptologist who truly listened to my concerns. With their support, I was able to get my medication and side effects under control.
This experience was a wake-up call for me. I realized the importance of advocating for yourself, especially when it comes to something as personal as your health. It’s not easy, but it can make all the difference.
The Decision to Switch Medications: A Leap of Faith
Years later, I was faced with another challenge: my health insurance stopped covering my medication, and I was forced to switch to a generic brand. At first, I was terrified. What if the new medication didn’t work? What if my seizures became unmanageable again?
But after a lot of thought and discussion with my doctor, I decided to make the switch. And much to my surprise, the new medication worked even better than the previous one. In fact, I started having fewer seizures.
It was another reminder that, even when it feels overwhelming, making informed decisions and advocating for yourself can lead to positive changes.
The Power of Advocacy for the Epilepsy Community
I’m not alone in my experiences. Many Minnesotans living with epilepsy face similar challenges—whether it’s navigating insurance policies, finding the right treatment, or overcoming social stigma. That’s why I became more involved in advocating for policy changes that support people living with epilepsy. Along with others in EFMN’s community, we’ve seen firsthand how powerful collective action can be.
I’m not alone in my experiences. Many Minnesotans living with epilepsy face similar challenges—whether it’s navigating insurance policies, finding the right treatment, or overcoming social stigma.
That’s why I became more involved in advocating for policy changes that support people living with epilepsy. Along with others in EFMN’s community, we’ve seen firsthand how powerful collective action can be.
Through our efforts, we’ve successfully passed important legislation like Seizure Smart Schools, which ensures that schools are better equipped to support students with epilepsy. We’ve also worked to reduce the license suspension time after a seizure and to implement Step Therapy Reform. These victories are steps toward a safer, more supportive Minnesota for all people living with epilepsy.
But There’s Still More to Be Done
Despite our progress, there’s still work to do. Epilepsy remains the most common neurological disorder among children, and a leading condition among adults. Yet, Minnesota still lacks dedicated state resources to support people living with epilepsy.
That’s why EFMN is working to establish a state epilepsy program within the Minnesota Department of Health. This program would connect individuals with epilepsy to essential resources and services, improving health outcomes, reducing stigma, and enhancing quality of life.
How You Can Make a Difference
As someone who has seen the impact of speaking up, I can tell you that change is possible—whether it’s by advocating for better medical care or by supporting policy changes that benefit the broader epilepsy community. Your support is vital to continue the work of advocating for positive change.
If you’re interested in supporting this important work, a gift to EFMN will directly fund efforts to improve the lives of all Minnesotans affected by epilepsy. Your contribution will help ensure that people living with epilepsy have the resources and support they need to thrive.
Together, we can build a safer, more inclusive Minnesota for people living with epilepsy.
Kyah Altier
Board Member
Epilepsy Foundation of Minnesota