Our Team, Our Stories
Dr Dalene von Delft
TB survivor & activist, treasurer of TB Proof Management Committee, medical doctor; Cape Town.
Dalene’s dreams of becoming a paediatric surgeon were seemingly shattered when she was diagnosed with primary multi-drug resistant (MDR) pulmonary tuberculosis on Christmas Eve of 2010. What followed was a harrowing 19 months of treatment, during which she had to make some potentially life-threatening decisions in an attempt to preserve her hearing and career.
Dr Wubshet Jote Tolossa
TB survivor & activist, nephrology fellow; Addis Ababa.
For all I knew, tuberculosis was easy to treat once diagnosed. Little did I know getting treated was not as easy as it seemed. I was not sure if I was unlucky or something, but things were not getting any better despite treatment.
TB survivor & activist, Operational Manager of TB Proof, Secretary of TB Proof Management Committee, dietician; Port Elizabeth.
I contracted drug-resistant TB in 2012 after being treated with immune suppressive therapy for ulcerative colitis.
TB survivor & activist, TB Proof Management Committee Member, gender studies UCT student; Cape Town.
In 2010, I was diagnosed with tuberculosis and was forced to stop my studies at Cape Peninsula University of Technology to go for treatment. Despite this my condition did not improve, and after about five months of treatment, first for “normal” TB and then for multi-drug-resistant TB (MDR-TB), I was finally diagnosed with extensively drug-resistant TB (XDR-TB), the deadliest form of the disease. MDR-TB treatment left me deaf, and I was told more than once that I might die from TB.
Dr Arne von Delft
TB activist, registrar in Public Health Medicine; Cape Town.
Arne experienced the horror of dealing with drug resistant TB, as a supporting husband and clinician, but also as a patient: he suffered through an episode of suspected primary pleural MDR-TB that fortunately resolved without treatment and is now thought to have latent infection. A subsequent attempt to treat this latent infection was discontinued after six weeks due to progressive fluoroquinolone-induced tendon damage with risk of Achilles tendon rupture.
TB survivor & activist, medical student; Cape Town.
In October 2012 I was diagnosed with Multidrug Resistant Tuberculosis Lymphadenitis and was to get through 18-24 months of treatment. Going through treatment was a nightmare.
Dr Koot Kotze
TB activist, medical doctor; East London.
I am passionate about TB. To be precise, to eradicate TB and to help those suffering from and affected by tuberculosis. As a medical doctor working in South Africa, I cannot avoid contact with this disease and every day it motivates me to work towards its end and to help those it hurts along the way.
Dr Philip Lederer
TB activist, Infectious Diseases physician & researcher; Boston.
A friend of mine was infected with TB in 2007 – thankfully she didn’t have drug-resistant TB and was cured. Based on that experience, I became passionate about reducing nosocomial TB transmission.
Dr Thato Mosidi
TB survivor & activist, Public Health registrar; Cape Town.
I’ve had XDR TB and received both bedaquiline and linezolid as part of my treatment regimen (while bedaquiline was still available for compassionate use). The aspect of TB Proof that I find truly valuable and that sets us apart from other organisations is the personal experiences that we have had with TB. Most of us have been infected at some point in time and some are still on treatment. The patient centered advocacy that is born from our experiences is unparalleled.
TB survivor & activist, financial advisor; Nelspruit.
During this process of the sickness, I have experienced stigmatisation and being rejected by colleagues, nurses and community because of my low weight and general weakness in my body. The experience has made me realise the importance of information – without knowledge one can easily perish. This agitated the need to give back by helping others who are going through this experience, to share light and educate about the disease and how to conquer challenges of the disease until they finally find their way back to their life purpose.
Dr Bart Willems
TB survivor & activist, Public Health specialist; Cape Town.
I have enjoyed the opportunity to work with others and the opportunities given to me through TB Proof: to expand my knowledge, meet other people who are interested in TB (or had TB) and to travel and share my story.
Dr Tiong Xun Ting
TB survivor & activist, research medical officer; Malaysia.
Being diagnosed with primary MDR-TB, going through treatment and being cured has impacted my life a lot. The process was hard, painful and a challenge towards my love ones – however, having been through TB changes my perception. Because of TB, I met wonderful people. It made me truly treasure my love ones and provided me with a better understanding of patients going through this disease.
TB survivor & activist, health inspector; Cape Town.
I was working as a health inspector in the Athlone district, Cape Town when I contracted MDR TB. My sickness was classified an Occupational Disease and I was on treatment from April 2013 to August 2015.
Dr Heena Narotam
TB activist, medical doctor.
Imagine being taught how to treat and prevent disease and then to step into the hospital environment to find that many of the preventative strategies taught to you are not being implemented – that was the bait that lured me into the work that TB Proof now performs on a daily basis. I am passionate about improved treatment regimes for patients, as I have borne witness to many of the inhumane side effects and consequences of treatment.
Dr Helene-Mari van der Westhuizen
TB activist, chairperson of TB Proof Management Committee, medical doctor; East London.
As doctor working in a TB endemic setting, I see the impact of TB every single day. Every time I hear someone cough I think of TB. It became an automatic reflex. But when I treat someone with TB, it is also a reflex to think of the personal experiences of many of my TB Proof colleagues. They have brave stories of combating stigma, persevering and enduring debilitating side effects to conquer this disease. This awareness have helped me to think about the broader impact of TB, and offer stories of hope and inspiration to many.
TB survivor & activist, Projects Coordinator for Nurses Trade Union; Johannesburg.
I had to be isolated from my family. I had to stay at the hospital for 3 months. It’s difficult to leave your 3 year-old and husband at home. It’s very difficult explaining to a little child what a disease is.
Andrea von Delft
TB activist, physiotherapist; Port Elizabeth.
Around World TB Day, TB Proof was telling healthcare workers, “You should get tested. You should be sensitive about your risk!” So my husband, Nielson, agreed to get a test, just routine screening. It was 10 o’clock on a Thursday evening and the phone rang: “Sorry to bother you, Doctor, but the sputum sample you sent in is positive.”
TB survivor & activist, professional nurse; Cape Town.
Talking about my experience of MDR TB has helped me to work through it all. In the beginning I found it extremely hard to talk about it. I always feel that if, by telling my story, I can help prevent one person from contracting TB, then having had it was worth it.
TB activist, dietician; Port Elizabeth.
As a community dietitian, I have worked with many malnourished TB patients in Nelson Mandela Bay. It was difficult and sad to hear some of the stories of family members abandoning patients as they didn’t want to be associated with someone with TB. I find it very valuable that TB Proof addresses the stigma surround TB.
Dr Angela Dramowski
TB survivor & activist, Infectious Diseases pediatrician; Cape Town.
My personal experience with TB motivated me to follow a career in infectious diseases, where I felt I could contribute to developing safer healthcare environments for patients and healthcare workers.
Ananja van der Westhuizen
TB activist, medical student; Cape Town.
I have a strong passion to help decrease the stigma associated with wearing a mask either to protect yourself or those around you, as this is one of the few things we have control over.
Dr Liani Smit
TB survivor & activist, Clinical Genetics registrar; Cape Town.
I am a medical doctor who was diagnosed with TB during my second year of internship in 2010. My symptoms were somewhat atypical – although I had fever, fatigue and progressive shortness of breath, I didn’t have a cough. At the time of diagnosis I was admitted to ICU with multilobar lung involvement, pleural effusions and massive mediastinal lymphnode enlargement.
Dr Chanèl Rossouw
TB survivor & activist, medical doctor, mountain guide, writer, photographer; Cape Town.
TB reminded me of how connected I am to everyone and everything around me – I’m a daughter, a sister, an aunt, a friend, a partner, a housemate, a neighbor, a colleague, a doctor, a patient. Wherever I’d been, TB had been as well. I was scared for myself, but more so that it would hurt people around me.
Dr Ruvandhi Nathavitharana
TB activist, vice chair of the TB Proof Management Committee, Infectious Diseases physician, TB researcher; Boston.
It is unacceptable that TB is once again the biggest infectious killer worldwide when it is largely speaking a preventable and curable disease. TB anywhere is TB everywhere– it is everyone’s problem and we must work together to end it!