16-year-old Sinethemba loves singing and reading books. Last year she was diagnosed with multi-drug-resistant TB, a strain of the illness which is resistant to many of the medications normally used to treat it. She blogs about how receiving a six-month trial of one the newest drugs on the market changed her life...
I lost my aunt in December last year, the one I was living with because my mother died when I was still a baby.
The day my aunt was laid to rest I started getting sick, I did not have an appetite for food. My skin colour was pale and I was shaking, sweating a lot at night. I did not enjoy all the things I used to do like playing with my friends.
An old lady who was a retired nurse noticed that there was something wrong with me. She told my grandmother to please not leave me in Port Elizabeth. She said she must take me with her, because I was sick.
Sinethemba and her grandmother, Vuyisiwa Madubela. Photo: Sydelle Willow Smith / Médecins sans Frontières
On that afternoon, I was tired and decided to take a nap. My grandma and uncle were sitting in the room where I was sleeping. My grandma noticed that I was shaking and my temperature was too high.
That’s when I became worried and my grandma started trying to wake me up. I couldn’t answer her because I was too weak. The day after that was a Sunday and we left for Cape Town. When we got there, my grandmother took me to Day Clinic where they ran all the tests and asked me to cough up some sputum to test for tuberculosis (TB).
‘Thank God you are here, we’ve phoned you and we sent people to come and fetch you’
My grandmother took the bottle with the sputum back to the clinic and the nurse said we should wait three days for the results.
The results came back and we went to the clinic again to collect them. When we got to the clinic we found a nurse waiting for us and she said, ‘Thank God you are here, we’ve phoned you and we sent people to come and fetch you.’
She told us the results came back and that I had multi-drug resistant tuberculosis (MDR-TB). She explained to us what MDR-TB is. When I heard the news it was too painful. I was crying and feeling sad. A lot was going through my mind because I had just lost my aunt, now this.
YOTV’s Blue Couch show broadcast this story about Sinethemba on 28 March 2017.
I asked myself why God is this happening to me, because I am still young to deal with all of this. Luckily for me I had my grandmother’s support throughout. She was my pillar of strength. That same day the nurses took me to see Doctor Kunene, the TB doctor in my local clinic, who told me that drug-resistant TB can be cured, I must not worry, and it does not kill if I take my treatment.
Imagine being told that you have MDR-TB just before Christmas
That day, the 24th of December, just imagine being told that you have MDR-TB just before Christmas. The same day the doctor gave me tablets which I collected from the TB room and I also got an injection. The nurse told us the injectable medicine can damage my ears and kidneys. So I went to the Town Two Clinic to check my hearing, but lucky it was OK.
Sinethemba taking her morning drug regimen. Photo: Sydelle Willow Smith / Médecins sans Frontières
Because we were going to the Eastern Cape for the festive holidays, they gave my grandma some injections for me to take along. I could be injected by her or a trained nurse, but we were lucky because my grandmother’s cousin is a nurse, so I was injected by her.
The injections were painful. I was scared of the needle because I had to be injected every day. Sometimes I would bleed and I even got lumps. I drank a lot of tablets, so I would vomit or be dizzy. Sometimes I would ask my grandma if I could skip the injections.
My counsellor explained that I didn’t have to die. I just had to take my tablets every day
When we came back from the Eastern Cape, we went to the clinic again for more tests and I gave more sputum. The results came back and Doctor Kunene told us that I had extensively-drug-resistant TB (XDR-TB), not just multi-drug-resistant TB. This was way more serious. I just said to myself that this is it, I’m going to die, because many who suffer from XDR-TB die. I just slept and worried. I could see my grandma was also hurting and all the family members too.
Dr Kunene introduced us to Thandi, a counsellor working with DR-TB patients, and explained that I didn’t have to die. I just had to take my tablets every day.
Sinethemba with two of her counsellors. Photo: Sydelle Willow Smith / Médecins sans Frontières
Doctor Kunene told us about a new medication that is available in Khayelitsha and not a lot of people have the luck to get it, and you have to sign papers for it. He also told us about the side effects, that it could damage the heart. And Dr Jenny of MSF explained to us more about this new drug called delamanid. In February 2015 I started taking it. All I can say is that there is hope and I trusted it with my life and it worked. My gran and everybody started noticing the difference; even my gran’s church friends saw the change.
I have gained weight and I love singing, reading books. I don’t sleep a lot anymore. It really helped me and I would say that TB does not kill. It can be cured with proper treatment. Also thank you to the people who invented delamanid because it can change a lot of lives. I would also like to thank the DR-TB counsellors– Xoliswa, Busi, Mdumi – for helping me through my journey so far.
There is hope. I trusted the new medication with my life and it worked
Sinethemba Kuse in the streets outside her home.Photo: Sydelle Willow Smith / Médecins sans Frontières