Living with TB

Every second someone in the world gets infected with the bacterium that causes tuberculosis. One third of the world’s population, around 2 billion people, already has this TB bacterium in their body.


Not everybody gets sick. Most people develop a latent or ‘sleeping’ infection, which is not contagious but can still develop into TB disease later in life.

Those people who do develop tuberculosis face an exhausting disease. Treatment takes months and in many countries people with TB face a huge social stigma. The disease often leads to loss of income and isolation. That's why TBVI is dedicated to delivering new, more effective TB vaccines.

Here are some personal stories of people who have or had tuberculosis and links to articles dealing with topics such as stigmatization:

A protracted cold, the doctor thought.Or gastric reflux, as the next diagnosis read. Or bronchial asthma. Test after test, diagnosis after diagnosis, it took Cordula from Germany about fifteen months to find out she had tuberculosis. 

 

Michael caught tuberculosis in Thailand. "I did get the BCG vaccination against tuberculosis when I was a baby. But according to my doctor, it had no longer any effect," he tells TBVI.

Natalie Skipper from Tennessee, USA, volunteered as a physical therapist in a 22-bed hospital housing patients infected with TB and HIV in South Africa. "As a physical therapist, I knew TB spread through the air, but I honestly didn't believe I was at risk, and I certainly didn't realize TB takes at least six months to treat under the best circumstances."

Australian chiropractor Alison spent years battling a severe case of extra-pulmonary TB. “This disease has cost me a lot... I lost my business, my independence and the place where I was living.”

Jo Chandler, Australian journalist, went to Papua New Guinea to make a reportage about tuberculosis. Eightteen months later, she was diagnosed with multidrug-resistant tuberculosis (MDR TB). "Let’s call it accidental immersion journalism."

Oxana and Pavel Rucsineanu fell in love under the drug-induced haze of powerful tuberculosis medications. They were both in their late 20s, and they should have been in the prime of their lives. But instead, Oxana and Pavel had a version of TB that is resistant to most drugs. They were living in a crumbling hospital in the Moldovan city of Balti. Read their story.

Phumeza from South Africa has been cured of Extensively Drug Resistant TB (XDR-TB) but lost her hearing four years ago, as a result of one of her treatments. She  turned campaigner whilst still undergoing treatment for XDR-TB. She felt it was unacceptable that the cure rate was so low, and the drug treatments so awful.

Winnie Fernandes from Sweden was suspected to have cancer. But it turned out she had extrapulmonary tuberculosis. View the ECDC film about the challenging diagnosis.

Stefan from the Netherlands had TB. "Tuberculosis is an unknown enemy that enters your body. And there is nothing you can do about it," he explains in a video interview.

Stefan and Andreea in Romania are undergoing treatment. That it has been eradicated is one part of the myth surrounding TB. Another is that only poor people get it. Their story is incorporated in an overview of TB in Europe.

A shocking photoreport by Prateek Ahuja from Cambodia.

50-year-old Vladimir has extensively drug-resistant tuberculosis. "I suppose I'll never run a marathon now," he says in an article by the EUobserver, "I just wish I could at least walk a few metres without losing my breath."

"The kind of discrimination I faced from my neighbours made me regret [sharing] my condition with them; I could not even share the [communal] sink," narates a woman in a PlusNews article about stigma in Kenya.

"How do you keep going when you're afraid to hug and kiss your own children because you could infect them?" TB-patient Suren Arakelyan (42) says in an article on tuberculosis in Armenia in The Age.

Gerry Elsdon was at the height of her professional career as a popular TV personality in South Africa when she was diagnosed with tuberculosis. She now serves as an advocate, a voice and face for TB, read and see what she has to say in this UNAIDS article and video.

Australian Christiaan Van Vuuren (27) had awakened in a cold sweat and felt a bit feverish, but chalked it up to a bit too much socializing. While in quarantine, he became a bit of a YouTube celebrity, writes The Washington Post.

Mohini Bai died of drug resistant tuberculosis. She had lost her husband to AIDS and both she and her younger son had also tested positive for HIV. A few years back she first contracted TB, according to her story retold in a Stop TB Partnership blog.

Do you have a TB story to tell?

Let us know!


Ms Erna Balk

Director Advocacy & Communications
+31 320 277 552 
erna.balk(at)tbvi.eu