TB patient’s struggle with treatment, social stigma

Juliet Mutanu flashes a genuine smile when asked if she’s fine with her story being published, and her name on it, including the picture.

“Oh yes, I don’t mind at all. I have seen and experienced the worst days in my life,” Mutanu said at Kenya Medical Training College (KMTC), Wote in Makueni County yesterday, revealing how stigma has impacted the campaign against Tuberculosis (TB), the leading infectious killer disease.

Disowned and looked down upon by her in-laws, scorned by a section of her paternal family, Mutanu cannot forget 2008, when she was diagnosed with TB.

The echoes of that August remain fresh as she narrated her life experience with the TB journey yesterday when Kenya joined the rest of the world to mark the global TB day.

“My TB was detected back in 2008, around August, September, when I started coughing,” she recollects. Before screening, Mutanu went to a shop and bought chest cough drugs for about two to three weeks when she started coughing.

However, the cough was persistent and she sweat at night. At this point she decided to go to the hospital.
After several hospital visits, the doctor instructed her to get a sputum sample, and after the microscopy tests, it turned out to be positive for TB.

“It made me so low, and I didn’t even know how to break the news,” she said, recalling this is where her predicament kicked in.

In the back of her mind she knew the matter was more than TB, and when the results came out, Mutamu was literally heartbroken because in the past TB was associated with HIV, AIDS.

“So I went home, and never disclosed to anybody,” she said, and this is because of the stigma associated with it

She took a 10-day prediction, but came with side effects; itching all over the body, and it was such visible.
So she decided to reveal to my sister-in-law.

“I have been taking these drugs for the last 10 days, and it turns out that I am developing serious side effects,” she said.
Already, word has spread, and back in her matrimonial home, the in-laws had congregated, and made a decision to excommunicate her.

“I was informed that it had been decided by the elders, and my husband was part of that outcome,” she said with a distant expression, stating that’s how she became a single mother of three to date.
“They had even packed for me. So I picked my belongings and went back home.

“I asked myself so many questions. I am I going back to the place where my father who died of TB, was buried?” And she thought she would be the next TB casualty in that home.
“So I went back home, with my children and that’s how my marriage ended,” Mutanu continued.

She went on with her journey of medication, transferred to another facility, and since she had revealed her status, and experienced the stigma, Mutanu decided enough was enough.
“I was not going to say anything more. I decided, my drugs and my TB are mine alone,” she said, and continued with her drugs.

She could visit the hospital, almost every week, because this is where she got encouragement.
On the fifth month though she decided to reveal her status, not caring about the consequences.
Her family members, brothers and sisters were shocked.

This made her sister to go away from home, for fear of being infected. “It wasn’t easy, we stayed for a long time without talking until when I completed my treatment,” Mutanu could remember, and being a TB champion, she reached out to her sister, and they reconciled.

And since 2013, she has been an inspiration to people living the disease, encouraging them to be positive about their condition.

“I have really grown until I have built myself a big house where I have hosted patients who have been discriminated because of their condition,” she said as speakers expressed fears about 20 percent of possible TB cases are missing, and could be out there infecting unknowing people.

Dr Samuel Kinyanjui, AIDS Healthcare Foundation country director noted that this number has active TB and has remained in the community, and that’s why the disease has continued to be of public health concern.

“Last year, the country did 90,000 case notification against a 133,000, about 68 percent, meaning there is need to do more, and find the missing numbers,” he said.

In Makueni County, a region with a growing TB incident burden with a target case notification of 2,352, but only 2,092 notified.

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