My Epilepsy Journey

The Beginning

I was diagnosed with epilepsy in childhood. That diagnosis arrived with something that still sits with me today: I was told I would never be able to study. Think about what that means for a child — to be told, before you have even begun, that the doors of learning are closed to you. I think about the children hearing those same words today, and it is one of the reasons I do what I do.

[TO CONFIRM WITH SHARLENE — this section invites her personal account of the early years: her childhood experience, what the diagnosis meant for her family, and what she felt at the time.]

A Life Built Anyway

I went on to earn a BA from the University of South Africa (UNISA). I completed Higher Diplomas in Education. I qualified as a Speech and Drama teacher from Trinity College, Dublin. I built a 27-year professional career spanning education, entrepreneurship, human resources, and executive management — including 15 years as Principal, Head of School, and College Director at Montessori Education South Africa.

None of that happened in spite of my epilepsy. It happened while I was living with it — managing it, navigating a world that often did not understand it, and refusing to let a diagnosis written by someone else become my story.

"Epilepsy is not just a medical condition — it's a social issue, a rights issue, and a community issue."

Finding My Voice

I became a Distinguished Toastmaster (DTM) — the highest educational award in Toastmasters International — and served as Division Director in Cape Town. Public speaking was never something I stumbled into. It was something I pursued deliberately, because I understood that words, delivered with conviction and clarity, can change the way people think and act.

[TO CONFIRM WITH SHARLENE — this section invites her to describe the turning point when she decided to speak publicly about epilepsy specifically, and what prompted that decision.]

Becoming an Advocate

I joined the board of the Epilepsy South Africa Gauteng Branch in 2019. On 1 April 2021, I was appointed National Director of Epilepsy South Africa — the first person with epilepsy to hold the position in the organisation's history, which goes back to 1967. I do not take that lightly. It carries responsibility, and it carries hope.

I am also Chairlady of the South African Disability Alliance (SADA) and a contributor to the International Bureau for Epilepsy's Advocate's Toolkit for Reducing Epilepsy Stigma in Africa. In February 2026, I chaired the National Epilepsy Indaba panel at Wits University on workplace stigma and access to care, and led National Epilepsy Week 2026 with daily public-education themes across the country.

In 2024, I rode the 947 Ride Joburg cycling challenge as an epilepsy awareness and fundraising campaign. In 2025, I did it again — this time leading a team of more than 30 riders. I still live with seizures. I rode anyway.

What I Want You to Know

If you are living with epilepsy, or you love someone who is: your diagnosis is not your ceiling. The people who told you what you could not do did not know your story — only you get to write that.

If you are an employer, educator, healthcare professional, or community leader: the person with epilepsy in your team, your classroom, or your waiting room is not defined by their condition. They are defined by what they bring. Your understanding — or your lack of it — makes a real difference in their life.

Epilepsy is a social issue. A rights issue. A community issue. And it is one we can address together — with awareness, with empathy, and with the courage to have the conversations that need to be had.

[TO CONFIRM WITH SHARLENE — this closing section invites her personal message and any final words she would like to share with visitors to this page.]