Claudia’s Story

Hello everyone,

My name is Claudia, and my epilepsy journey officially began in 2017. At 32 years old, I discovered that I had unknowingly lived with epilepsy for most of my life. I never realized that the silent, horrible sensations I experienced from time to time were actually seizures.

The ‘weird’ feelings began when I was about 13 years old. During these episodes, I felt something I couldn’t quite describe. I remained aware of my surroundings, but my body would freeze for 1-2 minutes. Each episode started with a sudden, intense, rising sensation deep in my stomach, followed by overwhelming nausea and the terrifying feeling of the room closing in on me. My body would panic internally, but outwardly, no one noticed anything unusual. By the time I could speak, the episode was over, and I kept it to myself. For years, I silently endured these moments, convinced that no one would understand or that they wouldn’t lead to answers. I never imagined these ‘weird’ feelings were seizures.

As a teenager, I adapted to living with these episodes, composing myself and waiting for them to pass. I believed I was alone—the only person who could feel something was wrong inside. But in 2017, everything changed. At work, I had a stronger, more noticeable episode. It came on suddenly, and for the first time, I lost brief consciousness. I woke up to paramedics telling me I had just experienced a seizure. I was in shock, confused, and insisted I was fine. Still trying to make sense of what had happened, I refused to go to the hospital that day.

About a month later, I had another seizure at home. This time, my husband called an ambulance, and I went to the hospital. The doctors confirmed it was another seizure and started me on anti-seizure medication. I was referred to a neurologist, who conducted further tests and provided a proper diagnosis. It was both a relief and a revelation to finally understand what I had been living with all these years. For the first time, I could talk about it and start finding answers.

I found an incredible neurologist who specializes in women with epilepsy. She conducted various tests to determine the source of my seizures. By then, they had become more frequent, making it even more crucial to find the right treatment. I started keeping a detailed record of each episode, noting the timing and duration. She diagnosed me with focal impaired awareness seizures also known as partial complex seizures. To help manage my condition, she adjusted my treatment plan, adding a second medication in hopes of better seizure control.

Unfortunately, medications alone didn’t keep my seizures at bay. When the next option presented to me was brain surgery, fear overwhelmed me. The idea of removing part of my brain seemed unimaginable. Still, I wanted to explore the possibility that surgery could eliminate the seizures entirely. My case was presented to an epilepsy board to determine if I was a suitable candidate. I placed my trust in God—if surgery was meant to be, the board would approve it. They did, and my surgery was scheduled.

On September 19, 2018, I underwent a right temporal lobectomy. Surgeons removed five inches of my brain in hopes of controlling my seizures. The healing process that followed was one of the toughest periods of my life. Recovery was painful and very challenging, but I leaned on my faith, family, and friends for strength. I found small ways to bring comfort and gradually, I healed. Their support made all the difference during those difficult days.

After surgery, I was seizure-free for a whole year! It felt like a fresh start, and I knew I needed to take better care of my health—not just for my epilepsy, but for my overall well-being. In 2019, I found an online fitness and nutrition platform called BODi, which helped me develop a healthier mindset, eat better, and stay active. Exercise became something I enjoyed, and for the first time in a while, I felt strong—both physically and mentally. The best part? I could do it all from home, on my own schedule. When I work out, I don’t think about my condition—I focus on how strong I really am.

I remained seizure-free for three years! In 2021, I decided to taper off my medication, thinking that surgery had completely ‘cured’ my epilepsy. A month after stopping the medication, I had a breakthrough seizure. It was so devastating. I thought I was done with epilepsy. But epilepsy doesn’t have a cure—yet. It’s a condition that we can learn to manage through persistence, adaptability, and resilience.

Taking care of my health not only helped me through some very challenging times but also led to an amazing opportunity with the company. In 2022, I was chosen to be the modifier for a workout program called For Beginners Only with one of my favorite Super trainers on BODi, Lacee Green. I couldn’t believe it—me, someone with epilepsy, being part of a fitness program! What a dream come true. Lacee even shared my story in one of the workouts. That experience showed me that epilepsy doesn’t define me. I am strong, capable, and can inspire others to keep going no matter their challenges. It was one of the best experiences of my life, I will always be grateful for it. This is what brings me joy and motivates me every day. My journey is still ongoing and I’m grateful for everything I’ve learned. I hold onto hope for a cure and determined to keep moving forward.

Kind words you would like to share with a parent or someone newly diagnosed:
If you’re struggling, keep looking for answers and don’t give up. Even when the journey feels hard and uncertain, remember—you’re not alone. With determination, faith, and the right support, you can overcome more than you ever imagined. My journey is still ongoing, but I’m grateful for everything I’ve learned. I hold onto hope for a cure and determined to keep moving forward. Thank you for letting me share my story.

Connect with Claudia:
Instagram: @claudiasosa327
Facebook: Claudia Sosa