My name is Noleen Munetsi, and I’m a 29-year-old advocate for epilepsy from Zimbabwe. As a sales and marketing executive, I’ve learned to navigate the challenges of living with epilepsy while pursuing my passions. My journey began in childhood, around the age of five, when I started experiencing starring spells and involuntary movements. Despite my family’s concerns, they initially attributed it to playfulness. After my mother’s passing when I was ten, I started having tonic-clonic seizures at school.
It wasn’t until after multiple seizures and injuries that my guardians sought medical help. I was diagnosed with secondary generalized epilepsy and prescribed phenobarbitone. However, due to a lack of understanding, my aunt didn’t continue the medication, and the seizures persisted. The stigma and misconceptions surrounding epilepsy were overwhelming. I faced withdrawal from peers, hurtful comments, and spiritual mis-attributions. I sought help from various sources, including traditional healers and spiritual leaders, but nothing changed.
A turning point came when I decided to take control of my life and seek proper medical care. I was put on lamotrigine, which controlled my seizures for almost two years. Although I had to switch medication due to skin reactions, I met Dr. G, who provided invaluable guidance and support. Recently, a neurologist diagnosed me with catamenial and photosensitive epilepsy, explaining why my seizures were linked to my menstrual cycle. This understanding has empowered me to manage my condition better.
Today, I’m open about my epilepsy at work and church, and I’ve found supportive communities. I’ve also co-founded an epilepsy support group with Dr. G to provide a platform for sharing experiences and reducing stigma.
Epilepsy is a manageable condition, not a life sentence. With proper care, support, and awareness, individuals can lead normal lives. My story is a testament to resilience and determination. Let’s continue spreading awareness and love to
reduce stigma.
I hope my story will undoubtedly inspire others, and I’m honored to have shared it.
Keep shining your light!
Lived experience story by Noleen Munetsi, Zimbabwe
This week is Zebra Epilepsy Stripes Week. To share your story and activities, email us of use our social media platforms, including our WhatsApp Hub which has more than 15 groups.
