As part of Multiple Sclerosis Awareness Month, we meet some of the South Africans living with the disease and raising its public awareness; Meet Christelle, who hasn’t let the disease take her taste for life!
South Africa (08 May 2023) – Community is how we thrive, we are able to connect with like-minded people and find support when needed. Multiple Sclerosis South Africa has become that for many people battling the disease. Christelle Taute finds great comfort in her community, especially by helping others navigate their own diagnosis. She was diagnosed in 2002 and refuses to let MS be the only part of her very fulfilling life. We got to hear her story, which she has shared in the hope of raising awareness and giving others hope.
The month of May is Multiple Sclerosis (MS) Awareness Month. The disease is still underrepresented in South Africa but that is about to change! Multiple Sclerosis South Africa is raising the profile of the disease, offering support for families and raising funds to help make a difference. Their goal is to unite Africa and create a federation for the continent that will empower thousands of sufferers.
Speaking to the team at MS South Africa, we got to learn more about the disease and how it is being managed in South Africa, which you can read here. They have shared some in-depth information about MS but if you have any questions, you can reach out directly here.
Today, we meet a South African living with the disease, Christelle Taute is a 52-year-old South African woman who is living with secondary progressive MS. While she has to carefully plan any trips away from the house, she still lives a full life with her husband and she is an active member of the Multiple Sclerosis Society of South Africa.
Christelle Taute’s Story
I woke up one morning, unable to see out of one eye. It was a public holiday in South Africa, so I waited until the next day to see my optometrist, who referred me to an eye specialist, who in turn referred me to a neurologist. I had optic neuritis, the neurologist suspected MS, but would not give me a positive diagnosis, as I had only one lesion that showed up on the MRI. That was in 2000.
Two years later, I had needles and pins in my hands. I went for another MRI. This time, about seven lesions showed up and the diagnosis of MS was confirmed.
For the first seven years, I had relapsing-remitting MS, but it has progressed considerably. I did not have any noticeable relapses for the first seven years, just a slow but steady decline in function and mobility. I am no longer able to walk and use a wheelchair and have done since 2014.
After using several of the disease-modifying medications, really failing all and still progressing, I underwent HSCT (haematopoietic stem cell transplant) in 2015. I am still in a wheelchair, but I am happy to report that all six subsequent MRIs, showed no disease activity or progression.
It was also just before this treatment, that I was medically boarded after quite an illustrious career in the recruitment industry. I loved what I did, but now I try to achieve in other ways. A life of significance is still very important to me.
Giving up one’s independence is tough. Pre-pandemic, I had quite a bust social calendar, but for any excursions that did not include my husband, I had to rely on others for lifts. I am pretty much housebound. Fortunately, I really like my house and I have no problem entertaining myself. Leaving the house requires very careful planning, it involves investigating the accessibility of the place I’m visiting, including the toilet facilities, getting in and out, parking for the person who drives me there, etc, etc, etc, but as long as I still have people in my life who will help me explore, Soon I will be off on holiday with my husband and whilst it would have been a different experience as an able-bodied person, I still intend to make beautiful memories and enjoy it to the utmost of my ability.
I am very fortunate to have Francois in my life. He is very supportive, caring and loving, but most of all he sees me and not MS. He has to do a lot more around the house than before, and he does a lot for me, as I can’t do the things I used to, but he certainly handles it with incredible patience and love.
We have a cleaner who comes once a week, and she also does my washing. It is really a blessing to be able to afford this luxury in my life.
Online shopping has to be one of the best inventions ever! I plan my menus, buy groceries according to that, feed my love of red wine with ordering from my favourite wine merchant, use the pharmacy for home delivery and buy beautiful clothes, decor items, etc. to ensure I don’t miss out.
MS has had a massive impact on my life. I used to love dancing, but can do that no longer! I was very ambitious, competitive and career driven, but now I focus on the here and now. One day at a time is the best way to keep your mind strong.
More than anything else, I am grateful to have the love of my life, family and friends on this roller coaster ride with me.
Christelle has a blog which you can read here, where she shared the journey of her treatment. She encourages people to help support MS South Africa. This can be done via their GivenGain fund here.
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