Xolelwa's Story of Triumph Over Tuberculosis

This post originally appeared on LillyPad US

My name is Xolelwa Joni, and I am from East London in South Africa. When I was 26, I contracted multidrug-resistant tuberculosis (MDR-TB) from my twin sister, Xoliswa. A week after my MDR-TB diagnosis, I was also confirmed as having extensively drug-resistant tuberculosis (XDR-TB) which forced me to be admitted in the hospital. Being diagnosed with XDR-TB was the most painful moment of my life.   

I had to stay in the hospital for four months, even though I never showed any symptoms and felt as healthy as I do today. After I was discharged, I had to go to the local clinic every day for treatment – that was three months of daily injections followed by 27 pills to take every day! Luckily, the clinic is not far from my home, but some people I met at the clinic had to walk a very long way. My ongoing treatment was difficult, but one of the hardest parts was the stigma that is still attached to TB patients in many communities. Others are very afraid and will tell you to stay away from those people.

For this reason, I was grateful to have the support of my family, friends and counselors. They visited me often and gave me the encouragement I needed to stick with my treatment - which lasted over a year. My family, especially my twin sister, was with me every step of the way. During my hospital stay, they tried to visit me every day. When they couldn’t, they would always check in with a message or a phone call.

As tough as this was, I am so fortunate that I was never had severe side effects from the medication that some people have. My twin sister, though, became very weak and developed a bad cough. It is strange that despite being twins and living in the same house, each of us reacted so differently to the same disease.

Then, in 2013, she passed away. She had fought so hard. It was a truly difficult time, but she inspired me to keep going, and I eventually beat TB.

Unfortunately, my story is not unique. There are many others around the world with stories just like mine. Last year, more than 9 million people developed TB cases and about a half-million people got MDR-TB. It is hard to believe in this day and age, but more than 1.5 million people still die every year from TB.

That is why today, March 24, is so important. I sincerely ask everybody – whether rich or poor – to mark today, World TB Day, to raise awareness about this disease and support efforts to stop it. It is in everyone’s interest!

When I was diagnosed with MDR-TB, I had to stop working. I am grateful to be back to work now, as a peer mentor with the Donald Woods Foundation, a key South African player in the Lilly MDR-TB Partnership and as a peer educator in the same hospital where I was once a patient. I am also pursuing my dreams of becoming a nurse. I always admired the nurses who helped me when I was sick. Now I am passionate about helping others.

In my current work, I am constantly reminded of the impact of this terrible disease, and the fear that it instills in its patients. My message to those out there still fighting TB is to be bold, be brave and be strong. TB is a difficult disease, but face it with determination and you will defeat it.