I’m truly honored to welcome Christelle Taute, Vice-Chair and Treasurer of the Multiple Sclerosis Society of South Africa (MSSA), to the podcast. As a passionate patient advocate, Christelle has spent years empowering others in the MS community by sharing her own journey with honesty, warmth, and resilience.
Her story is a reminder that even when health challenges seem overwhelming, life can still be meaningful, joyful, and full of purpose. Whether you’re newly diagnosed or have lived with MS for many years, I hope this conversation will inspire you, offer practical insight, and remind you that you are not alone.
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Introduction – Who is Christelle Taute?
Christelle Taute: My name’s Christelle. I’m 54 – although I still can’t quite believe that! I was diagnosed with MS in 2000 when I was 29. I’m not married, but I’ve been with the same partner for 21 years. We don’t have children, but we do have two cats who basically run the household.
I gave up working around ten years ago, just before I had a stem cell transplant. These days, I spend time running our household – which is a full-time job, to be honest. I read a lot and recently took up paint-by-numbers, which I do pretty intensely while listening to audiobooks.
I plan our meals, and my partner does the cooking – he’s fantastic. And my friends are very important to me. They play a huge role in my life.
If someone who doesn’t know you asked what drives you – what would you say?
Christelle Taute: I’d say it’s doing my best for others. Whether that’s my friends or people newly diagnosed with MS, I want to help. I always say: when I die, I want my gravestone to read, “She was a great friend.” That’s what matters to me most.
Diagnosis and status
When were you diagnosed with multiple sclerosis and what led to it?
Christelle Taute: I woke up one morning – it was a public holiday – and I couldn’t see out of my left eye. I thought maybe something was stuck, so I showered, but nothing improved. I went to the optometrist the next day. She referred me to an eye specialist, then I was sent for an MRI, and eventually to a neurologist.
Unfortunately, that neurologist wasn’t very kind. She didn’t like the MRI results, so had me redo them. When I came back, she said, “I think you have MS.” I cried immediately because I knew someone who had MS – my old boss’s wife – and she was in a wheelchair. The neurologist just looked at me and said, “Why are you crying? You’re 29. You’re too old to get married anyway.” It was honestly a horrible experience.
Two years later, I had pain in my arm and saw a different neurologist. He did another MRI and said, “Yes, it’s definitely MS.” The first MRI had shown only one lesion. Now there were eight.
You wrote so honestly about thinking your life was over – how has your perspective changed since then?
Christelle Taute: Back then, I honestly thought my life was over. That doctor’s terrible words didn’t help either. I even remember thinking that maybe something like aggressive cancer would’ve been easier – quick and over. But now, 25 years later, I’m so thankful. I’ve had a beautiful life, full of amazing people and experiences. Life turned out differently than I expected, but it’s still absolutely worth living.
Were you offered treatment options at that time, and how did you make your decisions?
Christelle Taute: At the time of my diagnosis, the only treatments available were three types of interferon. That was all you could choose from. Today in South Africa, there are more than 20 medications available, which is a huge difference. But back then, I was young, just starting out, and my medical aid wouldn’t cover the cost of treatment unless I had two relapses in two years. I had only had one. So I didn’t start treatment until two years later when I had another relapse.
In 2015, you underwent a stem cell transplant – how did that decision come about and how has it shaped your MS journey?
Christelle Taute: In 2015, I decided to undergo a stem cell transplant – specifically, an autologous hematopoietic stem cell transplant (AHSCT), which is essentially a bone marrow transplant. At first, I thought it was too invasive. But a couple of years later, I was already relying on a wheelchair when leaving the house, and I felt ready for something drastic. So I did it.
The process included harvesting stem cells, chemotherapy, and reintroducing the cells. It was expensive and not an approved MS treatment in South Africa. Friends helped me fundraise – they baked, hosted golf days, and more. I stayed in the hospital for a month.
Since then, for nine years, my MRIs have shown no progression. I had dreams of running on the beach again, but my main goal was to stop progression – and I achieved that.
Note: You can find more information on aHSCT in the interview with Prof. Roland Martin and Prof. Christoph Heesen
How would you describe your health and well-being today, almost 20 years after your diagnosis?
Christelle Taute:Today, I use a wheelchair and I’m no longer on medication – most drugs are only for relapsing-remitting MS. I do have good days and bad days. My bladder was badly affected, so in 2017, I had a urostomy operation. That made my life much easier.
Adaptation, Resilience & Lifestyle
You said MS stole your health, but not your joy or relationships. What helped you build that resilience?
Christelle Taute: I think I was just born with a positive attitude. But I also had an amazing example in my mom. My dad died when I was 11, and she raised three children on her own. That taught me resilience.
Gratefulness is a big part of it too. Being thankful for what I can still do – that changes your mindset. I read a book by Michael J. Fox, and he wrote, “Gratitude helps keep optimism sustainable.” That really stuck with me.
What lifestyle choices – physical, mental, or emotional – have had the greatest impact on your well-being?
Christelle Taute: In terms of lifestyle, I don’t follow any special diet. I eat healthily and try to include all food groups. I did experiment with ozone therapy – where they take your blood, add ozone, and return it through the other arm – but I didn’t feel major effects. What did help, though, was quitting smoking. I smoked for many years, but when I’d sneak a puff later, I could feel pins and needles immediately. That was a wake-up call.
Note: To get more suggestions on how to stop smoking have a look or listen into the interview with Dr. Claudia Marck.
Are there symptoms you still struggle with today, and how do you manage them?
Christelle Taute: Symptom-wise, I definitely struggle with fatigue. Mornings are better. I can still write legibly in the morning, but by late afternoon, it becomes unreadable. That’s why I paint or do anything demanding earlier in the day. Evenings I save for resting – so I can enjoy time with my partner when he gets home.
Advocacy, Awareness & Leadership
What are the biggest challenges for people living with MS in South Africa today?
Christelle Taute: In South Africa, one big challenge is finding neurologists with a strong interest in MS. There aren’t enough of them. And people who aren’t on medical aid depend on public hospitals, where the medication options are very limited.
We’ve also never had an epidemiological study in South Africa. We estimate there are around 5,000 people living with MS here, but we really don’t know for sure. We’d love to do a proper study, but that requires funding.
You’ve been active in raising awareness for MS through various platforms like Good Things Guy and the May50K campaign. What motivates you to stay so engaged in public advocacy?
Christelle Taute: I stay active in public advocacy because even if I only help one person, it’s worth it. It’s like the story of the man throwing starfish back into the sea – you can’t save them all, but you can save that one. That’s how I feel when I share my story or help with the MS Society.
As Vice Chair and Treasurer of MSSA, what have been some of the highlights or challenges of representing the MS community in South Africa?
Christelle Taute: As Vice Chair and Treasurer of MSSA, one highlight was becoming a member of the international federation (MSIF) and participating in the global May 50K campaign. That was a proud moment. We also have local focus groups and hold events. For World MS Day, a whole group of us with MS took a cable car trip and had a fun day with neurologists, quizzes, and community. Things like that matter so much.
Your blog “A Life Less Ordinary” offered so many honest insights and valuable lessons. What made that the right time to close it, and what role did writing play in your MS journey?
Christelle Taute: My blog “A Life Less Ordinary” It helped me process my thoughts and experiences – especially around the time of my stem cell transplant. During the pandemic, I started a new blog, The Corona Chronicles. Eventually, I felt it was time for a new generation of MS voices to take over. I’ve said what I needed to say.
Wishes and goals
Looking ahead, what’s one big dream or goal you still hold close?
Christelle Taute: I really want to visit Victoria Falls – I heard it’s quite accessible. And I still want to visit Ireland. I love Irish literature, films, and the accent. I lived in London for two years but never made it to Ireland. And hey, maybe I’ll bump into Bono in a pub!
What do you hope to see change in MS care, research, or support over the next 5 years?
Christelle Taute: In the next five years, I’d love to see either a cure or at least treatments that prevent disability entirely – so that people can manage MS without fear of future loss.
Quickfire Q&A Session
What’s your current mantra or motto?
Live life to the full and be continually, eternally grateful.
Looking back – was there a turning point or decision that shaped your journey?
Meeting my partner Franchois. His support changed everything.
If you could have a fireside chat with anyone, who would it be and why?
My mom, my partner, or my close friends. Those are the people who matter most.
Complete this sentence: “For me, multiple sclerosis is…”
„…not the end of the world. It’s challenging, but you can handle it.“
Any website or MS resource you swear by?
multiplesclerosis.co.za – it links to MSIF and other international resources.
A book or podcast you'd recommend to others navigating chronic illness?
Book recommendation: Between Two Kingdoms by Suleika Jaouad – a moving story about illness, recovery, and life.
Podcast recommendation: MS-Perspektive Podcast 🎧
Farewell
What advice would you give your younger self on the day of your diagnosis?
Christelle Taute: To my younger self: I promise you there are many, many more wonderful years ahead. Your life is just beginning.
Is there anything else you would like to share with the listeners?
Christelle Taute: To anyone struggling right now: MS may be a big part of your life, but it doesn’t define you. If you’re having a hard time, reach out – even to a psychologist. Having support helps.
How and where can interested people find you online?
Christelle Taute: You can find me through the MS Society South Africa website, or check out my blog for my full stem cell transplant journey.
Many thanks to Christelle for sharing her journey and being so active for the MS community.
See you soon and try to make the best out of your life,
Nele
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