The voices of TB

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Former tuberculosis (TB) patients from around the world  offered a unique glimpse at the impact of the disease on individuals, and the toll it takes on family and friends, by telling their personal stories at an event hosted by The U.S. Agency for International Development (USAID) in late March to honor World TB Day.

“Too often we focus on the tragedy – their stories force us to focus on the triumph,” said moderator David Rochkind, an award-winning photographer who focuses on health and crisis issues. He highlighted the fact that although TB is a treatable disease, 1.4 million people die of TB every year.

Below are brief profiles and pictures of some of the survivors featured in the event “Voices of TB.”

Francis George Apina addresses an audience about HIV-TB coinfection at The National Press Club.

“On behalf of the voiceless” – Francis George Apina, Kenya
When Francis was first diagnosed with HIV-infection, he could only get medication for weeks at a time, and they weren’t always available. He grew resistant to first-line medications, lost weight, and eventually had a CD4 count of seven.

“TB took advantage of my weakened immune system,” as well as many other opportunistic infections, Francis said. But diagnosing Francis’ TB was no easy feat, as TB is harder to diagnose in HIV-infected individuals. After multiple attempts to diagnose his TB failed, Francis’ active TB symptoms moved doctors to put him on anti-TB treatment in 2004 at a hospital in Nairobi – funded by the Global Fund to Fight AIDS, Tuberculosis and Malaria and USAID.  After eight months of TB treatment – on top of his 2nd line antiretroviral therapy (ART) – his TB was cured.

“We are here as the manifestation of your efforts bearing fruit,” Francis said, adding that U.S. dollars constitute 82 percent of the money that goes toward TB programs in Kenya.

Rosalie Stephson recalls her daughter Faith's encounter with non-pulmonary tuberculosis, and the stigma they both faced together.

“If I don’t speak up how can others learn about it?” – Rosalie Stephson and daughter Faith, Philippines
Rosalie’s daughter Faith was diagnosed with TB at age five in the Philippines, only Rosalie didn’t know it. The doctor told Rosalie that her daughter had “primary complex,” wrote a prescription, and sent them off without explanation. Years later, after a move to the United States, Faith developed a fever and sore throat. Eventually the lymph nodes on Faith’s neck started popping up. After a lymph node biopsy, doctors determined that Faith had TB and began to treat her. A swollen lymph node on her kidney then began putting pressure on one of Faith’s arteries, forcing her blood pressure to rise, which required another medication to control. 

“We experienced a lot of stigma. Nurses avoided her room… and school parents need more education about TB,” Rosalie said, referring to when she used to hide her daughter’s TB status from neighbors and friends because she feared Faith would be teased. Rosalie cried when talking about all of the medications her daughter had to take — nine pills a day for nine months — which often had side effects. “But I am thankful for migrating to the [United] States to make sure in nine months that she was cured,” she said.

Andre Gariseb from Windhoek, Namibia, tells audience members of his diagnosis with TB and subsequent treatment in 2008.

“Please don’t let it be TB” – Andre Gariseb, Namibia
When Andre finished school in 2008, he was helping to take care of his family, had a job, and provided for himself. Then everything changed, he said. He started coughing, had diarrhea and night sweats. Finally, when he started losing weight, he went to the doctor.

“I was praying it wouldn’t be TB – three of my family members had died from TB.” He was diagnosed and referred to the state clinic, where they put him on treatment. The doctors told him his left lung was entirely eaten by bacteria. Andre received daily injections through directly observed therapy, short course (DOTS).

“My first two months with TB were not a pleasant experience. My friends and family did not visit. You are on your own. I experienced the worst depression of my life,” Andre said.

But a welfare program in Namibia encouraged him to complete his treatment and educated him about TB.  In 2009, he tested negative, and now Andre shares his story with others to raise awareness. “This is a battle for everybody… As long as we share the same air it becomes everybody’s problem.”

Endalkachew Fekadu Demmisse underwent treatment for 23 months with highly toxic drugs to eventually beat out his multidrug-resistant TB infection.

“Saving my life was worth it” – Endalkachew Fkadu Demmisse, Ethiopia
In 2004 Endalkachew had just been accepted to attend a university in Addis Ababa, Ethiopia – a huge privilege in his family. At the same time, the first symptoms of TB began to appear.

After failing his initial treatment regimen, he was diagnosed with multidrug-resistant (MDR)-TB. But the drugs and treatment facilities were not available in his country, and his needed 2nd-line medications were too expensive. “Even a man from America cannot afford this price,” Endalkachew said.

But an organization in Colorado Springs, Compassion International, saved his life, he said, and provided him the support he needed to acquire the drugs.

The next 23 months of treatment with incredibly toxic drugs plagued Endalkachew with psychosis, constipation, vomiting and other side effects. Three other patients in his treatment group committed suicide, which he believes can be attributed to the drugs’ side effects. But Endalkachew was one of the lucky ones, he said, and was cured by 2007. He is now working to establish an MDR-TB association and treatment support group to help others struggling with drug resistant TB.

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