Epilepsy Advocacy
Raising awareness, reducing stigma, and building a world where people with epilepsy can live fully — without fear or judgement.
Why Epilepsy Advocacy Matters
Epilepsy is one of the world's most common neurological conditions — yet it remains widely misunderstood, surrounded by stigma, and often invisible in public conversation. That invisibility has real consequences: for people with epilepsy, for their families, and for communities who don't yet know how to respond.
For me, advocacy is not a career choice — it is a consequence of lived experience. I was diagnosed with epilepsy in childhood and told I would never be able to study. I know what it is to have a condition that the world does not understand, and to carry the weight of other people's fear and ignorance alongside the condition itself. Becoming the first person with epilepsy to lead Epilepsy South Africa was not just a professional milestone. It was a statement: that we belong at the table. That our voices matter. That epilepsy does not disqualify anyone from leadership.
Every talk, every conversation, every raised hand in a school room — it all adds up. Together, we can shift the narrative.
Photo: Pexels
Advocacy Themes
As National Director of Epilepsy South Africa and Chairlady of the South African Disability Alliance, Sharlene's advocacy spans awareness, stigma reduction, and disability rights — grounded in her own lived experience of epilepsy.
Awareness
As National Director, Sharlene leads National Epilepsy Week, international awareness campaigns, and media engagement — most recently headlining OFM radio for International Epilepsy Day 2026, and leading the National Epilepsy Indaba panel at Wits University.
Stigma Reduction
Sharlene contributed to the International Bureau for Epilepsy's Advocate's Toolkit for Reducing Epilepsy Stigma in Africa. She brings this framework to every talk — reframing epilepsy not as something to be ashamed of, but as a social issue demanding systemic change.
Disability Rights & Inclusion
As Chairlady of the South African Disability Alliance (SADA), Sharlene advocates for systemic disability inclusion across all sectors — from workplace compliance to genuine belonging. Epilepsy is not just a medical condition; it is a rights issue.
Audience Types
Sharlene tailors every talk to her audience — ensuring the message lands with meaning, relevance, and impact.
Schools
Age-appropriate talks for primary, middle, and high school students and staff.
Corporates & Workplaces
Wellness sessions, inclusion training, and neurological health awareness.
Community Groups
Awareness events, support groups, and local organisations across South Africa.
Medical Awareness Events
Partnering with healthcare organisations for patient-centred awareness campaigns.
Media Interviews
Podcasts, television, radio, and print media — sharing the epilepsy story with wider audiences.
Where Sharlene Advocates
Epilepsy South Africa — National Director
Appointed 1 April 2021. First person with epilepsy to hold the position in Epilepsy SA's history (founded 1967). epilepsy.org.za
South African Disability Alliance (SADA) — Chairlady
Leads the national alliance advocating for the rights and inclusion of people with disabilities across all sectors of South African society.
International Bureau for Epilepsy (IBE) — Africa Vice Chairperson
Contributor to the IBE's Advocate's Toolkit for Reducing Epilepsy Stigma in Africa — shaping the regional framework for stigma reduction.
Epilepsy SA — National Board Member (since 2021)
Grassroots governance and community support before stepping into the national leadership role.
Campaign Highlights
National Epilepsy Week 2026
9–15 February 2026. Sharlene led the week's daily public-education themes and appeared on OFM radio for International Epilepsy Day. Core message: "Epilepsy is not just a medical condition — it's a social issue, a rights issue, and a community issue."
National Epilepsy Indaba — Wits University
Sharlene chaired the National Epilepsy Indaba panel at Wits University, tackling workplace stigma and access to care — driving a national conversation on epilepsy as a rights issue.
947 Ride Joburg — Epilepsy Awareness & Fundraising
Sharlene rode the 947 Ride Joburg in 2024 and 2025. In 2025, she led a team of more than 30 riders — cycling despite living with seizures herself. Epilepsy awareness on wheels.
Epilepsy in South Africa & the World
- Epilepsy is one of the most common neurological conditions globally — affecting approximately 50 million people worldwide, according to the World Health Organization (WHO).
- [STAT — verify and source] estimated number of people with epilepsy in South Africa.
- The treatment gap is significant — [STAT — verify and source] percentage of people with epilepsy in sub-Saharan Africa who do not receive adequate treatment (WHO data).
- Stigma is a major barrier to care — in many communities, epilepsy is still attributed to spiritual causes rather than neurological ones, leading to delayed diagnosis and social exclusion.
- Epilepsy is highly treatable — [STAT — verify and source] percentage of people whose seizures can be controlled with appropriate medication.
Seizure First Aid Basics
- Stay calm and stay with the person. Note the time the seizure starts.
- Cushion their head with something soft if possible. Remove nearby hazards.
- Do NOT restrain the person or try to hold them down.
- Do NOT put anything in their mouth — people cannot swallow their tongue during a seizure.
- Once convulsions stop, gently roll the person onto their side (recovery position).
- Call emergency services if the seizure lasts longer than 5 minutes, if the person does not regain consciousness, if there is injury, or if another seizure follows without recovery.
- Stay with the person until they are fully conscious and oriented.
Source: Standard internationally accepted seizure first aid guidance. Always follow advice from local emergency services and your healthcare provider.
Sharlene's advocacy shares lived experience and general awareness — it is not medical advice. Full disclaimer.
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Bring Sharlene's message to your school, workplace, or community event. Create real awareness and lasting impact.