“We weren’t supposed to get tuberculosis": Meet two surprising survivors who could be you
A 20-something photographer. A famous TV personality. They share one thing in common that you’d never expect—both have triumphed over tuberculosis. For World TB Day, we share their inspiring stories.
And as you’ll see from these moving stories, the disease doesn’t discriminate either.
“It’s time for people to be more aware of tuberculosis,” says Cat Oyler, Vice President, Global Public Health, Johnson & Johnson. “It’s time for patients to be heard, to remove the stigma associated with TB—and for us all to commit to continue innovating in the fight against TB. This is a winnable battle. It is time to end this disease now.”
For its part, Johnson & Johnson has long been committed to helping end the disease through innovation, which is why the company recently announced a comprehensive 10-year commitment in support of global efforts to end TB by 2030 by improving access to treatment, accelerating how patients are identified, and advancing research and development efforts to create tomorrow’s TB treatment regimens.
Also essential in making strides to end TB: awareness.
Manasi Khade, 24, Mumbai, India
But at 19, she was diagnosed with extensively drug-resistant TB (XDR-TB), a form of the disease that is resistant to at least four of the major anti-TB drugs.
“I was at a point in my life where I was beginning to pursue my dreams, but after going to the doctor for a routine thyroid test, I was diagnosed with TB,” she says. When the doctor told her she had just six months to live, she “was heartbroken, and felt everything in my life was slipping away.”
India has the highest burden of TB in the world, and Khade had seen the devastating effects of the disease on her grandfather, one of her uncles and her father. “I didn’t want my family to struggle even more because of me, so I tried not to show my pain. But people stopped coming to our house because I had TB, and they didn’t understand that it wasn’t my fault. I got very depressed.”
Watching her father, who lost his eyesight to TB, ultimately triumph over the disease is what finally lifted Khade’s spirits and gave her the courage to fight through 2 1/2 years of treatment and surgery to remove part of her right lung.
Today she is cured—and living life to the fullest, having completed a multiday bike trek from Mumbai to Leh Ladakh, something she’d always dreamed of.
Now her wish is to see the day when TB doesn’t exist anymore—and she knows she has an integral part to play through advocacy.
“I don’t want this to happen to future generations,” she says. “It’s very important, especially for women, to end the stigma surrounding TB. In India, particularly in rural areas, females receive less emotional support from family and friends, and have less access to nutrition and health services. We need to speak up.”
One unintended side effect of Khade’s experience with TB is that it changed the way she views her photography.
“It’s hard to describe, and people may think it’s weird, but everything I see, and everything my camera sees, is a miracle. The fact that I survived was a miracle, so what I am seeing in every photograph is a miracle to me.”
Gerry Elsdon, 47, Johannesburg, South Africa
“I’d never known anyone who’d had TB, and I’d never heard of anyone who had TB anywhere other than their lungs,” Elsdon recalls.
She immediately started taking medication, and during her nine months of treatment, Elsdon did not experience any of the typical symptoms of the disease. “My lungs didn’t hurt, and I had none of the coughing,” she says. “Being non-symptomatic almost made it more difficult. I kept thinking: Why am I doing this? Why am I swallowing seven pills a day when there’s nothing wrong with me?”
But persistence with her treatment paid off. “I was cured,” she says, “but unfortunately, my womb was no longer viable. I couldn’t have kids. And I think that’s one of the reasons I decided to speak out about this scourge.”
Today, in her role as TB ambassador for the National Department of Health in South Africa and TB champion for the World Health Organization in Geneva, Elsdon works to raise awareness about issues surrounding TB that remain taboo in South Africa and developing nations around the world.
For example, people with HIV in Elsdon’s home country often die from TB, due to their lowered immune systems. So people who do not have HIV are afraid to seek treatment for TB for fear that others might think they’re HIV-positive.
“People aren’t going in for treatment because of that stigma,” Elsdon says. “That’s why we need to make the TB discussion as common as ones about the common cold. TB knows no boundaries. It doesn’t choose white or black, rich or poor, American or African. Everyone needs to speak up.”