If you’re living with MS or care about the global MS community, it’s essential to understand that while MS is one disease, it brings very different challenges depending on where in the world you are — and South Africa is no exception. In this episode, I want to give you an honest and comprehensive look at what it means to live with multiple sclerosis in South Africa — what works, what’s missing, and what’s slowly improving. Because although the symptoms and treatments may be similar around the world, access, support, stigma, and policy can vary tremendously.
My goal with this international series is to build a fuller picture of MS globally — to show how diverse the experiences are, and to remind us all: we are stronger when we stand together. MS doesn’t stop at borders, and neither should our understanding or solidarity.
So today, I invite you to listen in as I speak with Non Helena M. Smit, the passionate and inspiring CEO of MS South Africa, who shares her personal story, the reality of healthcare in the region, and the hopeful projects changing lives on the ground.
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Introduction – Who is Non Helena M. Smit?
Non Helena M. Smit: Sure. I live in the coastal town of Hermanus in South Africa with my husband and our two very opinionated cats, who absolutely run the household. I have two adult sons — one lives with his family in bustling Bangkok, and the other is based in Durbanville near Cape Town.
My connection to MS is deeply personal. My late husband was diagnosed in the early 1980s, but his symptoms started much earlier — optic neuritis in the early 70s. We spent nearly ten years seeing over 50 doctors before finally getting a diagnosis. Back then, MRI technology had just arrived in South Africa, and radiographers were still being trained abroad. I remember overhearing a radiographer explaining to a colleague what MS lesions looked like — that moment was both surreal and pivotal.
That experience shaped my life. I’ve now spent over two decades advocating for people with MS in South Africa. My work is purpose-driven, and helping just one person makes it all worthwhile. Also, there’s Alexander the Great — our cat — who was my son’s companion through tough teenage years. He quietly absorbed all the heartbreak and stress, and I believe he helped shape Eugene into the grounded man he is today. So yes, family, advocacy, and a bit of feline mischief keep me going.
The Situation in South Africa: Treatment, Support, and Numbers
Do you have up-to-date statistics on how many people in South Africa are currently living with MS? How have these numbers changed in recent years?
Non Helena M. Smit: We have a current estimate of around 5,000 people, according to the 2023 Atlas of MS. But we believe the real number is much higher due to underdiagnosis and limited access to specialists. That’s why research and awareness are so important.
Could you give us an overview of how MS care is structured in South Africa? What kind of treatments or therapies are commonly used or accessible?
Non Helena M. Smit: We have three sectors: private, public, and allied care.
In the private sector, those who can afford it or have medical insurance have access to the latest DMTs (disease-modifying therapies).
In the public sector, treatment is mostly limited to steroids for relapses. Long-term DMT use is rare. All 20+ DMTs are available in South Africa — but only if you can pay.
Allied care like physiotherapy, occupational therapy, and counselling exists — but again, it’s dependent on location and cost. Access is largely determined by financial means.
Challenges Faced by MS Patients
What do you see as the biggest challenges MS patients face in South Africa — whether medical, social, or logistical?
Non Helena M. Smit: The biggest issue is access — to diagnosis and treatment, especially in rural or public healthcare settings.
Misdiagnosis, delays in referral, and cost are serious barriers.
There’s also significant stigma and social isolation — particularly among newly diagnosed Black South Africans.
MS often hits during prime working years, which leads to employment insecurity and fear about the future. Many people end up with general practitioners who don’t recognize MS symptoms. That first missed referral can delay care for years.
Successes in the MS Community
What are some of the key successes your organization or the MS community in South Africa has achieved in recent years?
Non Helena M. Smit: We became a member of MSIF last year — a huge step. We’re also partnering in ECTRIMS’ Patient Community Day this September.
We’ve built strong partnerships with neurologists and host provincial MS events with direct patient-neurologist interactions.
We launched GP (General Practicioner) and allied healthcare upskilling webinars to help them recognize and refer MS.
Our peer support groups — via WhatsApp, podcasts, and webinars — connect MS patients across the country.
Awareness campaigns like May 50K, radio interviews, and social media storytelling have been powerful.
We provide workplace advocacy and have a dedicated labor law attorney for disclosure and accommodation issues.
And globally, we participate in working groups like Brain Health and PROMS. I truly believe we’ve connected the dots — from the neurologist’s office to the workplace. Our MS community is now more visible and empowered.
Future Improvements in MS Care
Are there any improvements or projects currently being planned to enhance MS care, access, or awareness in the near future?
Non Helena M. Smit: Yes, we’re pushing for better access in the public sector and working on a national MS registry.
We support increased participation in global research and early diagnosis across Africa.
I’ve been invited to a patient workshop in Nairobi this September, which is exciting.
We’re focusing on Epstein-Barr virus prevention, and on promoting “whole-person care” — medical, emotional, and social.
While the world works on a cure, we work on access, awareness, and earlier treatment.
Nele von Horsten:
Having Prof. Gavin Giovannoni on your side must help!
Non Helena M Smit: And we’re lucky to have Dr. Dion Opperman and Dr. Natanya Fourie from South Africa now on MSIF’s Global Medical & Scientific Advisory Board. We’ll all be at ECTRIMS — who knows what could come from that.
Clinical Trials and Diversity
How important is it for people with MS in South Africa — particularly those from underrepresented communities such as Black South Africans — to be better included in clinical research? And what efforts are being made?
Non Helena M. Smit: It’s crucial. Black South Africans remain underrepresented. We need to explore how MS manifests across different populations.
We encourage diverse participation and build trust by working with fair, inclusive researchers. Representation matters — if clinical trials exclude those needing better care, we all lose out.
Coping with MS in Daily Life
How do MS patients in South Africa cope with the day-to-day impact of the condition?
Non Helena M. Smit: They juggle parenting, work, and chronic fatigue. Support from family, pets, faith, and small routines helps.
WhatsApp groups are a lifeline — they allow national and regional connection.
Workplace challenges remain.
Disclosure and accommodation are hard.
We offer support via our labor law specialist.
Outside cities, mental health support is limited, but SADAG (South African Depression and Anxiety Group) helps fill that gap. Often it’s small things — a kind word, creativity, or group chat — that keep people going.
Emotional and Psychological Support
How important is emotional and psychological support, and what resources are available?
Non Helena M. Smit: It’s absolutely essential. Grief, fear, and sadness recur with each new symptom.
Mental health support must be integrated — not an afterthought.
MS affects identity and relationships. People need safe spaces.
We provide peer support, mental health webinars, advocacy, and referrals to SADAG — all free.
Awareness and Education Campaigns
What kinds of awareness or education campaigns around MS are happening in South Africa?
Non Helena M. Smit: This year we joined the May 50K campaign with a successful pilot and will fully launch next year.
We do national radio interviews, feature stories via Good Things Guy, and run social media and podcast campaigns.
We also partner with pharma to offer upskilling webinars for GPs, focusing on symptom recognition and referrals.
Advocacy and Patient Empowerment
How does your organization help MS patients advocate for themselves in the healthcare system or workplace?
Non Helena M. Smit: South Africa has strong laws — Section 9 of the Constitution, the Equality Act, and a white paper on disability rights.
But rights mean little if people don’t know them.
We close that gap by educating people on disclosure, access, accommodations, and legal recourse.
Families and Caregivers
What kind of role do families and caregivers typically play? Are there resources for them?
Non Helena M. Smit: Families are the backbone of support.
We include caregivers in all our groups, webinars, and resources.
We also emphasize their own self-care — the “put your own oxygen mask on first” principle.
We host webinars where caregivers share tips and routines.
Healthcare Professionals and Access
Which healthcare professionals are typically involved in MS care, and how accessible are they?
Non Helena M. Smit: We have brilliant neurologists — if you have medical aid.
Public hospitals have excellent neurology departments but limited treatment options.
Physiotherapists, biokineticists, and occupational therapists are vital — especially for fatigue and daily function.
Neuro-rehab professionals exist, but mostly in big cities. Rural access remains a major obstacle.
Legal Protections
Are there any laws or rights in South Africa specifically designed to protect people with MS or other disabilities?
Non Helena M. Smit: Yes, as mentioned, our Constitution and Equality Act are robust.
They require accessible public spaces, services, and workplace accommodations.
But we must ensure people are informed and empowered to use them.
Quickfire Q&A Session
Complete the sentence: "For me, multiple sclerosis is...."
Non Helena M. Smit: Both a challenge and a calling. It shaped who I’ve become and drives me to create dignity and hope for others on this path.
What development would you like to see in the field of multiple sclerosis in the next 5 years?
Non Helena M. Smit: Earlier diagnosis as the norm, not the exception. And real progress in Epstein-Barr virus research. Prevention might be key.
Farewell
What message of hope would you like to share with MS patients in South Africa?
Non Helena M. Smit: You are not alone. There’s a whole community that understands and cares.
There is always hope, support, and a reason to keep going.
Your story matters — we get it. So reach out. Stay connected. Life after diagnosis is possible.
How can people reach or learn more about your organization?
Non Helena M. Smit: Visit www.multiplesclerosis.co.za.
We’re also on Instagram, Facebook, LinkedIn, YouTube, and have a dedicated WhatsApp line.
I will keep a close look at South Africa and the Atlas of MS to see how numbers of patients might go up.
See you soon and try to make the best out of your life,
Nele
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