Rising Stars: Meet Samantha Moreno of Los Angeles / OC

Today we’d like to introduce you to Samantha Moreno.

Alright, so thank you so much for sharing your story and insight with our readers. To kick things off, can you tell us a bit about how you got started?
I was diagnosed with epilepsy when I was 11 years old after having my first seizure in my 6th-grade history class. In school, I quickly became known as *the girl with seizures*, which is exactly what a preteen going through puberty wants to be known for.

Not long after my diagnosis, I began having seizures every month, either a week before or a week after my menstrual cycle. My mom started tracking everything: my seizures, menstrual cycle, food intake, and medications. She quickly noticed a pattern between my menstrual cycle and my seizures.

My mom, with her broken English, taught me not only what a mother’s love looks like but also what it truly means to be an advocate. She brought her concerns to my neurologist, hoping to understand the connection between my menstrual cycle and seizures. Unfortunately, he quickly dismissed her concerns. It wasn’t until twenty years later, when I began doing my own epilepsy advocacy work on social media, that I discovered catamenial epilepsy was actually a thing. My mom had recognized something all those years ago that no one bothered to take seriously.

For most of my epilepsy journey, I lived in denial. I wanted nothing more than to live a normal life and not be defined by my diagnosis. It took being denied my driver’s license yet again and an encouraging conversation with my older brother for me to finally begin accepting my epilepsy.

During that conversation, my brother asked me, “What if you are meant to figure out epilepsy?”

Now, he was talking about finding a cure, but considering I’m horrible at math and science, I did what any other millennial would do: I started a social media platform dedicated to epilepsy. And that’s how *Figuring Out Epilepsy* was born.

What started as a way for me to better understand and accept my own diagnosis turned into something much bigger than I ever imagined. Through my advocacy work, I’ve been able to create educational resources, lead a Spanish peer support group with Young Adults with Epilepsy, become a special education teacher, and help countless individuals and families navigating their own epilepsy journeys.

Looking back, I realize that my mom was my very first example of what advocacy looks like. Even when her concerns were dismissed, she never stopped fighting for me. And now, twenty-five years later, I get to use my voice to advocate for others.

But my story doesn’t end here. I have big plans for the epilepsy community, especially when it comes to education, accessibility, and making sure underserved communities have a voice.

Maybe my brother was right after all. Maybe I was meant to figure out epilepsy. Just not in the way he originally imagined.

I’m sure it wasn’t obstacle-free, but would you say the journey has been fairly smooth so far?
Living with epilepsy is never a smooth road. There have been countless medications, trial and error with treatments, lifestyle changes, mental health struggles, and years of denial before finally reaching a place of acceptance. One of the hardest parts has been trying to figure out the “why” behind my epilepsy without ever getting clear answers from the very experts who are supposed to have them.

Then there’s navigating the healthcare system, dealing with the stigma and misconceptions surrounding epilepsy, and trying to live as normal a life as possible while having a condition that can be so unpredictable. Epilepsy affects so much more than just having seizures. It affects your independence, relationships, mental health, and even how you see yourself.

For me, one of the biggest struggles has been learning to accept a life that looks different from the one I imagined. Having to depend on others for transportation, missing out on opportunities, and constantly having to explain a condition that people don’t fully understand can be exhausting.

But through all those struggles, I’ve learned something about myself. I’m a lot stronger than I give myself credit for. I’ve learned that accepting my epilepsy doesn’t mean I have to love everything that comes with it. I can still have difficult days, feel frustrated, and wish things were different while also being proud of how far I’ve come.

And perhaps the biggest lesson I’ve learned is that I don’t have to let epilepsy define who I am, but I can allow it to shape the difference I make in the world.

Thanks for sharing that. So, maybe next you can tell us a bit more about your work?
My advocacy work focuses on raising awareness, educating others, and creating a community where people living with epilepsy feel seen, heard, and supported. Through my social media platform, *Figuring Out Epilepsy*, I create educational resources, challenge misconceptions, and provide opportunities for others to share their stories. I also lead a Spanish peer support group with Young Adults with Epilepsy because I believe language should never be a barrier to accessing information, resources, or support.

One of my biggest passions is making epilepsy education and advocacy more accessible, especially within underserved and Spanish-speaking communities. As a special education teacher, I’m also furthering my education to better understand and advocate for students with disabilities and their families. I want to help bridge the gaps between education, disability rights, and advocacy because there is still so much work that needs to be done.

I think what I’m most known for is my educational resources and my realness when it comes to living with epilepsy. I don’t believe in sugarcoating what life with epilepsy looks like. Some days are great, and other days are incredibly difficult. I talk about the struggles, frustrations, mental health challenges, and the things people don’t always want to discuss. I want people to know that they aren’t alone in those experiences.

What I’m most proud of, though, is the life I’ve built despite being told so many times what I couldn’t do because of my epilepsy. I’ve spent much of my life hearing about my limitations, and I’ve made it a point to challenge those expectations. I’m a single mom living independently, raising my daughter, working full-time as a special education teacher, going to school to earn my teaching credentials, and somehow finding the time to advocate for the epilepsy community and collaborate with organizations to create more opportunities and resources.

And trust me, it’s not always easy. There are days when I’m exhausted, overwhelmed, and wondering how I’m going to get everything done. But I do it because I want my daughter and others living with epilepsy to see that having a disability doesn’t mean giving up on the life you want.

I think what sets me apart is that my advocacy doesn’t come from just knowing about epilepsy. It comes from living with it for over twenty years. I’ve experienced the stigma, the limitations, the frustrations, and the healthcare system firsthand. I’m not advocating from the outside looking in. I’m advocating as someone who understands what it’s like to be on the other side of those conversations.

At the end of the day, I don’t want to just raise awareness about epilepsy. I want to create actual change. I want better education, more accessibility, stronger disability advocacy, and a world where people with epilepsy are given opportunities instead of being told what they can’t do. And if my story can help even one person realize that their diagnosis doesn’t determine their future, then I know I’m doing something right.

Where we are in life is often partly because of others. Who/what else deserves credit for how your story turned out?
My family deserves so much credit for where I am today. My mom was my very first advocate. She taught me what it means to fight for someone you love, even when the odds are against you and no one seems to be listening. My older brother helped me begin accepting my epilepsy and encouraged me to be the change I wanted to see in the world. He’s actually the reason *Figuring Out Epilepsy* exists today. My dad never allowed me to use my disability as a reason to give up on the life I wanted. He always believed I was capable of achieving my goals, even when I doubted myself.

And then there’s my daughter, who deserves more credit than she’ll ever know. She’s loved me through some of my hardest moments and has experienced the ups and downs of living with epilepsy right alongside me. Being a single mom with epilepsy hasn’t always been easy, and there have been sacrifices and struggles along the way. But she’s been one of my biggest motivations to keep going, even on the days when I feel like giving up. I want her to know that life doesn’t always go according to plan, but that doesn’t mean you stop trying.

I also want to give a huge shoutout to the countless people who have helped me along the way. Whether it was giving me a ride because I couldn’t drive, taking care of me after a seizure, checking in when I wasn’t feeling well, or simply encouraging me when I needed it most. Those little acts of kindness have made a bigger difference than people probably realize.

And a special shoutout to everyone who has never treated me differently just because I come with a spicy brain! Because, let’s be honest, living with epilepsy is already complicated enough without people making you feel like you’re incapable of doing things.

One thing I’ve learned throughout my journey is that having a strong support system makes a world of difference when you’re living with a disability. Independence doesn’t mean doing everything on your own. Sometimes it means having people in your corner who are willing to help you achieve the life you want without making you feel like a burden.

I may be the face behind *Figuring Out Epilepsy*, but I wouldn’t be where I am today without the people who have loved me, supported me, advocated for me, and reminded me of what I’m capable of when I couldn’t see it myself. And I hope that through my advocacy, I can be that same kind of support for someone else.

Contact Info:

• Instagram: https://www.instagram.com/figuringoutepilepsy/
• Facebook: https://www.facebook.com/figuringoutepilepsy
• LinkedIn: https://www.linkedin.com/in/figuring-out-epilepsy
• Youtube: https://www.youtube.com/@FiguringOutEpilepsy
• Other: https://open.spotify.com/show/0FSz0Iga37dfoaG4cJfL9C?si=4ef802b1abe14182