(As told by her to CNS during the 44th Union World Conference on Lung Health held in Paris)
My name is Xolelwa Joni and I am 26 years old. I come from Cape Town in South Africa. After finishing my secondary school education I did a course in information technology. In my family I have my 85 years old father, my 63 year old mother, my 32 years old elder sister, a younger 11 year old brother and my twin sister from whom I contracted MDR-TB. All of us live together in a two roomed house.
I was diagnosed with MDR-TB in 2012. I got it from my twin sister who has been on MDR-TB treatment for the last 4 years and has now developed XDR-TB. She got the TB germs from her friend who had MDR-TB. The strange thing is that I never had any external symptoms of TB and neither did I ever feel sick. I have always been as healthy as you see me now. It was just because of the contact tracing of family members of my twin sister that my MDR-TB status could be confirmed. They took my sputum for testing and also did an X-Ray. I got my results after 2 months and then was admitted in the hospital in July, 2012. I remained in the hospital for 4 months. Then after getting discharged from there I was directed to go to my local clinic every day to get my medicines and injections. Fortunately the local clinic is not very far from my home.
My treatment is free from the public health facility. Earlier I had to go to my hospital (where I had been admitted at the start of treatment) every month for my review and sputum testing. But in the continuation phase of treatment, the frequency of hospital visits has reduced. Now I have to go to there once every three months for my review and also to take my pill-package for the next 3 months which I deposit in my local clinic. The clinic gives me the medicines for 5 days to take home. This saves me the trouble of going to the healthcare facility every day for my MDR-TB medication. Now I have to go there once every 5 days. This has also helped me to continue with my new job which I started 3 months ago.
I was told by the hospital to wear a mask but I never did. We just keep the doors and windows of our house open to let in fresh air all the time and close them only at night.
I have to take 27 pills every day. Around midnight I put my 27 pills in a glass with some water to dissolve them, and then at 3 am in the morning I eat or rather drink them and by 8am I am fit and ready, like anybody else, to go to work. I am really fortunate that I never had any side effects of the toxic drugs which I have to take every day. My twin sister, on the other hand, has had severe side effects. She has become very weak and still coughs a lot. She has been on drugs for the last 4 years. It is strange that though we are twins and living in the same house, both of us have reacted so differently to the same disease. I was working in a shop when I was diagnosed with MDR-TB but then I had to drop work. Now I have started working again 3 months ago and I am with Donaldson Foundation.
MDR-TB treatment is really a difficult one. We have to take so many big pills and injections for such a long time. On top of this, most of us have to suffer from severe side effects. It makes one feel very miserable and angry that why I got TB at all. TB develops negative emotions in us which increase our day to day problems. There is still some stigma around the disease in the community and neighbourhood. If you have TB people stay away from you and tell you on your face not to come near them. It is here that counsellors and voluntary health workers can help, as they did in my case.
They visited me at home, gave me a lot of moral support, and encouraged me to continue with the treatment. I got a lot of support from my family too, especially my twin sister. My friends were also quite okay with me. My boyfriend, whom I met three years ago, also stood by me. He is a social worker and also a cured TB survivor. Perhaps it was due to this that he did not let my TB affect our relationship. I have just two more months to go for my treatment to be over and after that we hope to get married.
I wish there was a fixed dose combination with all the drugs in just one pill. That would really make the treatment so much easier for us. Then adherence to treatment would also be high. I think the governments and pharmaceutical companies should look into this matter and have a fixed dose combination medicine available to all MDR-TB patients.
My message to all those with TB or MDR-TB is to be brave and to accept it. Acceptance always makes things easier. It becomes difficult to fight the disease if you are depressed and harbour negative thoughts. Do not care about what other people say. Just ignore their comments. There is nothing else one can do about it. If you have it, you just accept it that way and continue with the treatment even if it hurts. So just be bold. TB is a deadly disease, so face it with a deadly determination and defeat it.
November 2013
(The author is the Managing Editor of Citizen News Service - CNS and is supported by Lilly MDR TB Partnership to provide conference coverage from 44th Union World Conference on Lung Health. She is a J2J Fellow of National Press Foundation (NPF) USA and received her editing training in Singapore. She has earlier worked with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored and edited publications on childhood TB, childhood pneumonia, Hepatitis C Virus and HIV, violence against women and girls, and MDR-TB. Email: shobha@citizen-news.org, website: www.citizen-news.org)