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Living with multiple sclerosis (MS)

Multiple sclerosis (MS) is a neurological autoimmune disease affecting up to 5 000 South Africans. Christelle Taute, 52, has been living with it for 22 years.

21 June 2023 | By Glynis Horning

Christelle was 29, making waves in the recruitment industry and loving life. She enjoyed running, swimming and going dancing on weekends. Then one morning she woke up unable to see through one eye. Her optometrist referred her to an eye specialist, who in turn referred her to a neurologist.

Diagnosis: MS

“When he suspected MS, my heart froze – the wife of my first boss had it and was in a wheelchair!” Christelle recalls. An MRI scan showed a lesion, but it was not enough for an MS diagnosis and she relaxed. Then, two years later, she experienced pins and needles in her hands. This time the scan showed seven lesions and Christelle was told she had relapsing-remitting MS.
“After about 10 years I moved on to secondary-progressive MS,” says Christelle. “There was a slow decline in function and mobility. I needed to hold someone’s arm walking, then I needed a crutch, two crutches, and in 2014, a wheelchair. I could no longer walk.”

New hope for treatment

Christelle constantly researched developments in MS treatment online, and in 2015 set her sights on a new procedure for autoimmune disease, which had already been used for years to treat blood cancers: haematopoietic stem cell transplant (HSCT). Online, she found a man with MS who had tried this, but his account of an infected port put her off. Her MS was also more progressed than in most candidates, and when she found one of the only doctors in South Africa doing the procedure, the waiting list was long, as cancer patients took precedence. 
Christelle persisted. “An MRI showed my MS was active, and without HSCT I could become bedridden or die,” she recalls. She approached a haematologist who agreed to do the procedure. “He showed me how to give myself injections for a few days to stimulate my marrow to produce stem cells; it was painless. So was harvesting the stem cells –I just sat in a chair while they ran my blood through a drip needle for six hours, separating out the stem cells and returning the rest to my body.” 
A week later Christelle was admitted to Mediclinic Constantiaberg and a port was inserted in her chest.

“I was given chemotherapy through it for a week to kill my immune system, then I was given my stem cells through it and kept in isolation for 25 days while my immune system regrew. I had two really bad days, but it was so worth it! All six MRIs I’ve had since show no disease activity or progression.”

Living with MS

Losing her independence has been tough, Christelle concedes. “I rely on others for lifts and am pretty-much house bound. But I’m blessed – I met a marvellous man four years after my diagnosis and we have now been together 19 years. Francois patiently supports me. I shop online and he cooks while I read him the recipes. And I have amazing friends and family – they even baked and held golf days to cover my HSCT medical bills.”
Equally importantly, since being medically boarded she has found new ways of giving back and giving life meaning. “I’ve done writing courses, and I help people with write-ups or their studies, and I lend a hand at Multiple Sclerosis South Africa. A life of significance is still very important to me.”