Health

September 25, 2024

Our struggles with ignorance, stigma, poverty — TB survivors

Our struggles with ignorance, stigma, poverty — TB survivors

…Advocate increased awareness of treatment & prevention

By Chioma Obinna

Tuberculosis (TB) remains a significant health challenge in Nigeria, with low awareness and access to treatment contributing to its persistence. Many Nigerians suffer from TB without knowing it, leading to delayed diagnosis and increased transmission.

Recently, awareness around the disease sits as low as 25 per cent while the country ranked highest in Africa on TB burden.

 Good Health Weekly  spoke to TB survivors about their experiences, the challenges they face, and the need for improved awareness and healthcare services.

“I was dying. I could not even talk well. I could not breathe well. The pain has gone to my back that I can’t even sleep well,” Abdulsalam Abdulquadri, a TB survivor tells Journalists in Lagos.

Like Abdulsalam, Ms Kadiri Oluseyi sees her experience with TB as a dream. “I’m a TB survivor and a woman living with HIV, surviving TB for me was a dream”, says Kadiri.

As you read their stories, many Nigerians are still not aware that cases of TB are commonplace in the country.

For Abdulsalam, what began as a seemingly innocuous chest pain soon escalated into a terrifying battle for survival.

Abdulsalam’s ordeal began with persistent chest pain that was initially dismissed as a minor ailment. Despite seeking help from traditional healers and taking various medications, his condition deteriorated.

He experienced severe coughing, weight loss, and eventually began coughing out blood.

Narrating his experience, he said: “On this fateful, I just realised I was having chest pain. I thought it was just normal chest pain. I didn’t even bother or even care about it. For three days the chest pain continued. I told one of my roommates but we both thought it could be smoke.  I used Rob believing that it was cold or I hit my chest on the floor.  It did not work.

Six months later, the battle continued. “Everything was just like, life was turning for me. I can’t even go to school again because I have started coughing very loudly. “

Abdulsalam who did not know what was wrong with him failed to inform his parents blaming his condition on his lifestyle. “I stopped going to class. I have to isolate myself. At that time, I felt that everything was just going down for me still I did not have any idea what was going on with me.”

“I didn’t know the drugs to use. But it got to some time, I discovered a drug for myself, each time, I took it, I will sleep off but when I wake up, I will still be in pain.”

Spiritual Journey

It is no longer news that in Nigeria cases of TB are mostly linked to witchcraft or spirituality.

Desperate for a cure, Abdulsalam embarked on a spiritual journey, seeking help from traditional healers and religious leaders.

Unfortunately, these efforts were fruitless.

Abdulsalam felt the worst had happened. “I thought, it was the end of my life. I almost died out of ignorance.   I thought it was a spiritual thing.

In search of a cure, his friend introduced him to a spiritualist who gave him different concoctions that never worked. “The herbalist gave him different drugs but his condition became worse.  I was helpless.  I can’t even talk well or breathe well. The pain has gone so bad that I can’t even sleep well. I had to lie down most of the time. I can’t eat or laugh due to the pain.”

At some point, when my mum came into the picture, we went back to that Baba again. I spent another three months at Baba’s place, doing all types of rituals, and there was no change in my condition. I even begged God for help because the pain was much for me.  I asked God to take my life.”

Hope

Abdulsalam’s struggle persisted until his auntie, and her husband, intervened.  He was taken to a private hospital and was again misdiagnosed but later referred to Sacred Heart Hospital.

Abdulsalam was wrongly placed on diabetic’s treatment.

“It was there they did an X-ray and took my sputum. Then, the doctor came back and said I have diabetes. The treatment also brought me another different experience because the drugs they were giving me were turning me into a zombie. I could remember my first two weeks.  It was like the world would end because it wasn’t easy. I can’t even imagine the number of drugs I need to take in a day.

“It started affecting my vision. I couldn’t see well. I developed abdominal pain and my liver started swelling up.”

This continued until he was finally diagnosed with TB.  He was placed on free TB treatment.  Today, he has recovered but not all Nigerians who were infected are alive to tell their story.

His experience is not different from millions of Nigerians who tested positive for TB and initially had no information regarding the disease.

His story also resonates with Kadiri Oluseyi’s story.  For Kadiri, surviving TB as a woman living with HIV was a dream.

Ignorant of her status, she was coughing but never realized it was TB.   “It started like coughing. She took several bottles of Codine and Benylin cough syrup. But the cough persisted.”

At a point, Kadiri increased her medication with the addition of septrin and Piriton, which constantly made her sleep.  She developed rashes on her hands and legs as well as her stomach and itching at the same time.

Kadiri who lives in a remote village recounted how she was going to religious houses and drinking concoctions in the name of a cure.  Sometimes, one perfume they called Holy Michael is mixed in the concoction. This continued until she passed out and found herself in a hospital.

Journey to recovery

Kadiri’s journey to recovery was fraught with challenges. She faced discrimination from healthcare providers and community members, who stigmatised her due to her illnesses. Additionally, the medications she was prescribed often had severe side effects, making it difficult for her to adhere to the treatment regimen.

“At a time when the thing was getting worse, the community people gathered money and said, Madam, you need to go. Where will I go? So instead of me going, I would lock myself inside.  I have a nurse who lives outside the community.  She works far but because of me, she will come home to give me an injection for two days. She will run away again.

By the time the family got to understand, the father came to fight me. Her family accused me of wanting to kill their daughter. She stopped coming.  Until I passed out and I met myself in a hospital. It was in that hospital that I was tested and found to have HIV and TB.”

 She was later referred to the Nigeria Institute of Medical Research, NIMR.

Triumph of resilience:

Getting to NIMR, she was placed on both ARV and TB treatments. But at the time, she wasn’t improving and the curve was getting serious and even with her viral load, everything was just upside down.

 “I was coming from the remotest part of Badagry to NIMR.  “There are days that I have to leave home for like 4 or 5 am, trying to escape traffic to get to NIMR.  I will still get there by 9 or by 10 am.

Battling Stigma

Worse still, Kadiri lost her teaching job. Life became worse.  “Stigma was coming from the health providers. My stigma then was not just the community. But the major stigma then was the fact that I couldn’t go close to a health provider. 

Even merely entering is like; you are a kind of creature that I don’t know how to explain. Until one day, I had to fight that woman.”

 Despite these obstacles, Kadiri persevered. With the support of his family and healthcare providers, he managed to overcome her illnesses and regain her health. Today, she is a survivor and a passionate advocate for TB and HIV awareness.

Today, Kadiri is now dedicated to raising awareness about TB and HIV and advocating for better healthcare services.    The experiences of Abdulsalam and Kadiri highlight the significant challenges faced by TB survivors in Nigeria.

By addressing these challenges through increased awareness, improved healthcare access, and reduced stigma, experts say Nigeria can make significant progress in combating TB and improving the lives of its citizens

Reports have shown that TB remains the 13th leading cause of death globally while the country is also the sixth nation with the highest number of TB cases according to the Global Report on TB.

In 2021, according to the World Health Organisation, WHO, a quarter of the global population is estimated to have been infected with TB bacteria while an estimated 10.6 million people fell ill.

Sadly, 80 per cent of Nigerians are not aware of TB and in 2023 alone; in states like Lagos, over 18 million cases of TB were diagnosed.

Experts Speak

Meanwhile, health experts at the just concluded three-day media workshop have said that to curb the spread and reduce the burden of TB, awareness about the disease must be raised.

 They believed that the lack of awareness among the people had remained a barrier to efforts in combating the disease.

Speaking at the workshop with the theme: “Strengthening Media Partnership and Collaboration for TB Control in Lagos State”,  the Coordinator, of Lagos State TB, Leprosy, and Buruli Ulcer Control Programme, Dr. Olusola Sokoya,  disclosed that only 30 per cent of the Nigerian population is aware of signs and symptoms of TB.

Sokoya said the 2022 Global TB Report, showed that 2.9 million TB cases were missed globally, with Nigeria among the five countries accounting for over 50 per cent.

He said to successfully combat TB; at least 80-90 per cent of the population must be educated on TB symptoms.

Also speaking, a representative of the National Tuberculosis, Leprosy, and Buruli Ulcer Control Programme (NTDCP) Federal Ministry of Health Abuja, Mrs Stella Makpu, called for greater private sector participation in the fight against tuberculosis (TB).

She noted that TB, a preventable and treatable disease, continues to pose a significant public health threat in Nigeria, adding that effective control requires a multi-faceted approach involving government, healthcare providers, and the community.

She highlighted the crucial role of awareness creation and adherence to treatment regimens in combating TB.  “Tuberculosis is an age-old disease that has been ravaging humans for centuries.

“It’s not a fight for one person or one body. It requires a collaborative effort to tackle this disease.”

She emphasised the need for increased private sector involvement in TB control initiatives. “By leveraging their resources and expertise, the private sector can contribute significantly to funding, awareness campaigns, and treatment programmes.  The government alone cannot bear the burden of combating TB,” said Mabu.

She said the Federal government has taken steps to address the TB epidemic, including allocating funds for awareness campaigns and treatment programmes.

She expressed optimism about the potential for progress in TB control with increased private-sector engagement.