Our battles with stigma, self-denial almost killed us -TB survivors
Discarding the toga of shame and stigma, which she has lived with since being diagnosed with tuberculosis, 26-year-old Ishola Adams, for the first time, boldly agreed to share her experience.
She is a survivor and battled with the killer disease for 15 months.
The English graduate revealed that she started having TB symptoms 41 days after giving birth to her daughter and would have died, if not for the intervention of her father.
Adams said spent over N420,000 on lung surgery and medications to decongest her right lung, which was damaged by TB after she was wrongly diagnosed with malaria and typhoid fever by a private hospital in Lagos.
It started as body weakness
Recalling how it all started, Adams said she observed strange changes in her body after childbirth, but could not lay a finger on what could be the cause.
“I started experiencing total body weakness, fatigue and a dry, prolonged cough, yet never felt it was something serious to seek medical care for,” she recounted with gloom.
However, on her father’s advice, she went to a General Hospital in Lagos, where a series of medical tests were conducted on her.
with the medical investigations showing that she had TB, Adams said her life changed forever, especially when she was dealt the painful blow of being discriminated against by friends and members of the public.
TB explained
According to the World Health Organisation, Tuberculosis is an infectious disease that often affects the lungs and is caused by the bacterium Mycobacterium Tuberculosis.
It spreads through the air when infected people cough, sneeze or spit.
Available data shows that TB is the 13th leading cause of death globally, the second leading infectious killer disease after COVID-19, and is rated above the Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome.
The WHO’s data indicates that about a quarter of the global population is estimated to have been infected with TB bacteria and an estimated 10.6 million people fell ill with tuberculosis – six million men, 3.4 million women and 1.2 million children in 2021.
The Global Tuberculosis Report 2022, ranked Nigeria as the sixth nation with the highest number of TB cases.
Nigeria, in 2021, contributed 4.4 per cent to the total TB cases globally.
Data showed that two-thirds of the global TB cases are found in eight countries including India, 28 %; Indonesia, 9.2 %; China, 7.4 %; the Philippines, 7.0 %; Pakistan, 5.8%; Nigeria, 4.4 %; Bangladesh, 3.6%; and the Democratic Republic of the Congo, 2.9 %.
However, while ending the TB epidemic by 2030 is among the health targets of the UN SDGs, a total of 1.6 million people, who died from TB in 2021, including 187, 000 people with HIV, makes this target appear daunting.
Surviving TB lung surgery
After living in denial following her confirmatory TB test and being unable to find an answer to how she contracted the lung disease, Adams said with the encouragement of her father, she went for treatment at the Lagos State University Teaching Hospital, Ikeja, Lagos.
It was at the same facility that she later had surgery to decongest her lung.
Our correspondent learnt that the surgery cost the mother of one quite a fortune, despite the widely held claims that TB and HIV treatments are totally free across the country.
She recounted, “After failing to manage my sickness, I was forced to tell my father, who asked me to visit the hospital for a check-up and possible treatment. I went to a private hospital on June 3, 2022, and was treated for malaria and typhoid fever but I wasn’t getting any better.
“At a point, I started coughing out blood, and my father advised me to go to a government-owned hospital for comprehensive examination. So, I went to the Alimosho General Hospital in Igando, where it was detected that I have TB but I disagreed with the result. When I told my father, he advised me to go to the Lagos University Teaching Hospital.”
Weak and in pain, Adams set out for LASUTH and was shocked to be handed the same verdict.
“The nurse in charge asked me to bring other members of my household for a test to be sure that none of them had been infected. I didn’t pay money at the TB centre for the tests but I paid heavily for the surgery and drugs. I started treatment three days after I was diagnosed with TB and it lasted for six months.”
Unfortunately, two months after completing her TB treatment, Adams had a relapse.
“I started coughing again and I went back to the hospital and complained. I was sent for another test to know whether the virus was still in my system.
“Unfortunately, the test was positive and I had to repeat another six months of treatment, making it one year. It wasn’t funny but my life was more important to me.
“The side effect of the TB drugs was difficult to bear. It comes with vomiting and dizziness. After completing the one-year treatment, I was still feeling very weak and the cough persisted. I also developed chest pain and started losing weight. I was still coughing out blood and became darker and very pale.
“It was when I went for a chest X-ray and other tests at LASUTH, that it was discovered that one of my lungs had been badly damaged by TB. The doctor recommended surgery. I was afraid and it took my whole family and the intervention of my pulmonologist to convince me to go for the surgery. It was successful and I paid over N420,000 for the surgery and drugs. I am happy that the pain and cough stopped.”
Adams advised Nigerians to stop living in self-denial and seek help if they notice any of the symptoms she earlier highlighted.
“I advise those shying away from going for treatment to do so immediately. And if you have been diagnosed, don’t play with your medications. I was told that the reason mine lasted for so long was because my TB developed resistance to the antibiotics I was taking. I was not taking it regularly.
“Whenever you notice anything like weakness, tiredness, fever and prolonged cough, quickly go to the hospital before you start coughing out blood. I believe that if I had delayed, my case would have been worse than this,” she added
Hard living with HIV and TB
At LASUTH, our correspondent met a TB patient, Ibrahim, who came for a check-up and to collect his free routine TB medications.
The young man said while he was yet to accept the reality of being HIV positive, he came down with tuberculosis. Ibrahim has been living with HIV for the past two years, while he is in the fifth month of his TB treatment.
According to him, he relaxed his HIV treatment and his viral load went up, exposing him to tuberculosis infection.
“I was diagnosed with HIV two years ago and I have been taking my drugs but I stopped sometime in June when I travelled to see my family in Kano. I stayed for some months without taking my HIV drugs.
“Because I wasn’t feeling sick, I came back and didn’t go for my ART until I started coughing. The cough was getting worse by the day, leaving me with terrible chest pain. I decided to go to the hospital to continue with my HIV treatment but was referred to the TB centre for a test.”
Continuing, Ibrahim said, “The test revealed that I had TB. I became frustrated and wondered how I was going to cope with TB and HIV medications at the same time. I was confused; I felt like dying.
“But I was told that once I adhere to the medication, I will be fine. Since I started treatment for both ailments, I have been fine.”
He bemoaned the discriminatory attitudes of the public towards TB patients, saying, “People started disassociating themselves from me because of my cough. They didn’t know my HIV status but noticed that I was losing weight and coughing. They may not say anything to me but I could observe their reactions towards me. TB patients should not face discrimination or be stigmatised.
“I must advise anyone who suspects TB, especially if there is prolonged cough to seek medical intervention as this may save millions of lives under TB threat.”
Ending TB would save lives, lift people out of poverty
The Executive Director of the Joint United Nations Programme on HIV/AIDS, Michel Sidibe, ending TB would save millions of lives and help lift people out of poverty.
“A third of all people living with HIV die of TB. By working together, we can achieve a healthier future for all,” he added.
According to The Joint United Nations Programme on HIV and AIDS, people living with HIV are 20 times more likely to come down with TB, than those without the virus, and TB is the leading cause of death among people with HIV.
According to UNAIDS in 2017, approximately 300, 000 people died from AIDS-related TB.
UNAIDS noted that HIV and TB form a lethal combination, with each speeding the other’s progress, adding that without proper treatment, 45% of HIV-negative people with TB, and nearly all HIV-positive people with TB will die.
“In 2021, about 187, 000 people died of HIV-associated TB. The percentage of notified TB patients who had a documented HIV test result in 2021 was only 76%, up from 73% in 2020.
“Overall, in 2021, only 46% of TB patients known to be living with HIV were on antiretroviral therapy,” it added.
TB-HIV management is not easy – M
