The moment Sandy van Niekerk sent the tweet out on World Tuberculosis Day, she knew she was finally ready to face the world and tell her story.
The tweet, 'I survived #mdr #Tuberculosis and finished my BSc at #Maties #WorldTBDay @scienceSUN' has been retweeted several times and so far some of the replies indicate that other students are facing a similar struggle.
Sandy was diagnosed with multiple drug resistant TB when she was a 19 year old BSc student at Stellenbosch University in 2007. Since then she has completed her MSc and an internship at the University of Cape Town.
Now, at 28, she is not only clean from the dreaded Mtb (Mycobacterium tuberculosis) infection, but also eager to add her voice to tell people to please test for TB and make use of the support structures available.
"Today I realise I should have listened to my body more. Please, be aware and go and test yourself," she pleads.
In Sandy's case she didn't experience any of the typical symptoms associated with the disease, only a consistent feeling of fatigue: "I thought feeling tired all the time had to with the stress of studying and attending classes."
It was only when she was visiting her parents in Swellendam during a holiday break that she suddenly coughed up blood. "I was in the mall with my mom and aunt. I was surprised and showed it to them. They immediately made me sit in a corner while they conferred at another table. My aunt then confronted me with the possibility that it may be TB and said we should visit the hospital the next day for tests."
Sandy's aunt is a matron at the Swellendam hospital and her mother is a biology teacher at a secondary school in the town. They also opted for tests at their house doctor.
A day later the first test came back negative. Three days later the second test came back positive for multiple drug resistant TB.
She can still remember the words with which the doctor broke the news: "Jy is ietwat bietjie siek," she said. You are like a little bit sick," she said.
She also remembers a beautiful map of Swellendam on the wall of the clinic with all the TB cases in the area indicated with a yellow pin. "For me they put up a purple pin, because I was a special case. I was terrified, especially about how other people were going to react to the news."
Together with her parents, they decided not to share the information with her three younger siblings. "I was very conscious of the stigma attached to people with TB and didn't want to burden them with that." She also didn't inform the university. "I didn't want to be treated special, or like someone who was sick."
The family immediately had everybody close to her tested, including her roommate at varsity. They all tested negative and to this day Sandy does not know how or where she picked up the TB bacterium.
What followed was a daily regime of taking six different pills every day for seven months and thereafter four different pills for the rest of the time, as well as a host of other pills for dealing with side-effects like nausea and vitamin supplements to keep her immune system healthy.
From the start, she says, her parents motivated her to take the disease in her stride and not allow it to disrupt her studies or her life. It wasn't easy.
"It was a team effort. My partner was with me every step of the way. I participated in all the family activities, like hiking. My brother and sisters thought I was lazy or not feeling well. They only learned I had TB the day I took my medication for the very last time.
"Of course they were furious with me," she laughs. "But it was for their own good. They were just too young to deal with something like this."
But, she admits, "I don't think I will be able to go through it again. It made me grow up quickly. It also made me realise that one cannot be judgmental."
Sandy has nothing but praise for the support she received from the people at the Swellendam clinic and other institutions.
"The people at the clinic explained everything to me, how TB works and what the different pills are for and what side-effects I will experience and what I can do about it."
She also singles out the DOTS group in Swellendam, a group of volunteers whose aim it is to ensure that TB patients take their medication on a daily basis. DOTS stands for Directly Observed Therapy Strategy, and is recommended by the World Health Organisation.
And then, of course, her parents. Without whom she would not have been able to overcome this obstacle.
Sandy will continue with yearly checkups probably for the rest of her life. For now she is completing her work on the mammalMAP project at UCT, and then she will start looking out for an opportunity where she can combine her love of science with her newly discovered love for writing and translating science to something everyone can understand and enjoy.
For interviews, contact Wiida Fourie-Basson, media: Faculty of Science, Stellenbosch University, science@sun.ac.za, 021 808 2684, 071 099 5721
