“How Could I Have Gotten This?” – Reflections on MDR-TB from a Nigerian Student

Nigeria has the highest number of people with TB in all of Africa, 590,000, the fourth highest number in the world.  Only 15% are diagnosed and reported, with the rest lacking access to appropriate services.  Nigerian experts have noted the need to address widespread stigma and myths about the cause of TB.

Civil society groups have called for urgent action.  68% of the TB program budget remains unfunded, but the government recently pledged to increase its spending on TB.  USAID is assisting the country, for instance by supporting community-based management of MDR-TB.

I recently had the chance to speak to Tanwa, a brave young nursing student, originally from Nigeria and now living in the US, who is undergoing treatment for Multi-drug Resistant Tuberculosis (MDR-TB).  She has been taking the grueling regimen of MDR-TB medication since last year — and still has eleven months to go.  Her comments show the urgency of the MDR-TB crisis and provide insights into the experience of patients.

How did your friends and family react to your diagnosis?

Where I live there is a Nigerian community, including family friends. None of them knew I had tuberculosis because of the stigma attached to it. My family members knew about it and they were kind of supportive. My brother is married and has two little kids, but they were taken away from me because I was in isolation for four months. They thought I was going to infect the kids because they were little.

I was very depressed. I was in denial for a very long time because of the stigma attached to tuberculosis because people think it’s a disease of the poor. How could I have gotten this? I almost committed suicide at one point.

Were you afraid?

Yes, I was afraid because I asked a lot of questions which the nurses were not able to provide an answer to because they did not want to release too much information to me at that time. So I was kind of worried. And then even when they said I was not contagious, I was still placed in isolation. So I had to do most of the reading on my own to understand what is what. At one point, I couldn’t differentiate between extensively drug resistant TB and multi-drug resistant TB, and I thought that it was not going to be treatable and that I was going to die from it.

How aware of TB are people in Nigeria?

I would say people are unaware of tuberculosis in Nigeria. Once I’m done with my medication, hopefully I will be able to go to Nigeria to raise awareness. Even the health care workers over there don’t really know how to take care of tuberculosis. We don’t have the right medication and corruption is a major problem. If I had been in Nigeria and diagnosed with MDR-TB, I would be dead by now, because we don’t have what it takes to take care of this disease. Now I’ll be able to go back based on my experience to educate people and create awareness and advocate for tuberculosis.

What do you think needs to be done for patients, even once they get medication?

The depression is just too much, psychologically and emotionally. So, based on my own experience, we should have access to family and friends who can visit us. We should not be quarantined for that. Like when I go for my doctor’s appointment, I used to have a mask on so as not to infect other people, so I could have a mask on and have my family and friends come visit. I don’t want others to go through it, so I’m not going to do anything purposely to infect other people. There should be a room to accept visitors. The local health departments that monitor and assist clients with TB also need funding so that they can better support their patients.

What do you think Congress and the President should do?

What we need is robust funding for tuberculosis. If they could develop a new vaccine which prevented tuberculosis, it would be much cheaper than treating it. Congress should invest more money in research and development because the medication we use was developed as far back as World War II. And the side effects of multi-drug resistant tuberculosis treatment are very life threatening, like liver, hearing loss, and vision impairment. I was in treatment for a few months before they discovered I had MDR-TB, so they need to invest more in the research and development of measures against multi-drug resistant tuberculosis, including early diagnosis.

More education and awareness is needed, especially among the doctors and clinics in the US, to recognize the signs and symptoms of active TB and also the treatment. Doctors are not always thinking of TB even when the symptoms are very obvious. The education of the general public is also necessary to insure that misunderstanding and ostracism of anyone with TB is quelled.

You never can tell who is going to have it because tuberculosis is an airborne infection. You can be on the train, on the bus, in a conference and someone coughs and you get it from them. So they really have to do something about it. Not just in the least developed countries, but in the United States too. Do you know how many people could have contracted it from me from the airplane? From my school? At work? And when I was at the NTCA conference, I was surprised to see that Americans have tuberculosis. They’ve never been out of the United States before – how did they contract it? You never can tell.

Finally, what would you like to say to others going through TB treatment?

I would just say take your medication, even though it’s not easy. I have to take the medication for two years. I have eleven more months to go. And you have to surround yourself with people who are more positive. They’re encouraging. And be positive. Stay positive, take your medication regularly, and I think you’ll be fine.