MY TEENAGE BATTLE WITH MDR-TB: JOHN STORY’S
Meet John, a 21-year-old boy who bravely battled Multi-Drug Resistant Tuberculosis (MDR TB). He greets everyone with a smile and his vibrant personality is evident from his distinctive hairstyle and striking dress code. You can hardly miss him in the midst of a crowd.
I first met John during a visit to Murang’a County Hospital, a facility supported by the Centre for Health Solutions – Kenya. I was in the company of a delegation from World Health Organization (WHO), Green Light Committee for an evaluation exercise. The team was visiting to conduct an evaluation of the implementation of the Programmatic Management of Drug-resistant TB (PMDT).
John was in a meeting in the company of other TB patients and I later learnt that the agenda of that meeting was to review MDR TB patients’ treatment progress, which is done on a monthly basis. “This is a best practice done only in Kenya among the 47 African countries that we have visited,” the WHO team noted.
John was the highlight of the meeting as he had just completed his 21 months of MDR TB treatment. How encouraging! All the patients looked at him with deep admiration. He spoke with boldness and enthusiasm and without seeing him, one would never have guessed he was that young. It was at this meeting that I got interested in knowing more about his journey to healing.
I visited him at his home in Kabati, Murang’a County. He is currently preparing to sit for his final secondary education exam – Kenya Certificate of Secondary Education (KCSE) at the end of the year. “I have a lot to catch up on as I missed school for two years owing to the treatment period and adherence that comes with TB treatment,” he explained.
How did he contract TB?
John contracted TB two years ago when he transferred schools after what he describes as a family disagreement. He moved from his mother’s house in Murang’a to live with his elder sister in Nairobi. Life in school continued normally, but after two terms in his new school, he started coughing. The cough persisted for a number of weeks until one day his sister advised him to seek treatment at a nearby health centre.
After a number of tests he was diagnosed with TB. At that time, he had perceived TB to be like an ordinary flu so he had no reason to worry. He was put on drugs for six months. However, while still on treatment, he was again moved to a boarding school. While at the new school, he completed his treatment and was confirmed free of TB.
However, his plight was far from over. John started experiencing excessive night sweats and weakness. The symptoms became so agonising that the School Principal asked his mother to take him for treatment.
This time round, he was diagnosed with MDR TB.
He was put on 21 months treatment starting with eight months of both drug intake and injections forcing him to drop out of school. The drug effects were so severe that he started recognising the severity that comes with TB. During this period, he developed interest in learning more about TB and would often search on the web for more information using his smart phone. He mastered the symptoms as well as adverse drug effects like more breakouts on the face and loss of appetite. This helped him develop an in depth understanding of the disease and further reduced his worry.
Effect of MDR TB on his social life
During the treatment period, he encountered some social challenges as the community isolated him. John had been put on Directly Observed Treatment (DOT), which is a WHO recommended TB control strategy.
“My friends could not understand what kind of disease I had that made me visit the hospital daily,” he said. To overcome this ridicule, he had to lie that he had been offered a job at the hospital. This made him dislike himself and lowered his self- esteem. Filled with self-pity, he could not understand why this had to happen to him.
Similarly, his family was not free to interact with him. He vividly remembers one evening when his young brother came home from school with homework and he offered to assist him. His brother brushed him off saying that he had forgotten his books at school just to avoid close contact with him.
Message to other MDR Patients
John however has words of encouragement for other TB patients and urges them to keep taking the drugs as instructed despite the challenges.
“TB is curable so do not get discouraged while on treatment,” he emphasizes.
He adds that he is grateful to the doctors at the CHS supported Murang’a County Hospital who walked him through the treatment journey. “The doctors were supportive and treated me more like a friend than a patient,” he said, naming Mr Waweru a Clinical Officer who is also the sub County Tuberculosis and Leprosy Coordinator (sCTLC) as his friend to date.
John has an ambition of being a TB ambassador and is working on a project to reach out to people especially in schools and at the work place to create awareness on TB. He is so determined to do it and willing to volunteer after his studies as he builds on his music talent. This is because he believes that people lack sufficient information about TB. He gives an example of a friend who had a prolonged cough that saw him go to an extent of coughing blood. To that point, he had experienced all the TB symptoms but ignored them until the pain became so excruciating that he was forced to seek medical help. Had his friend been aware of TB symptoms, John believes that he would not have suffered that long.
On the reduced treatment period for MDR TB
John was delighted to learn that the treatment period for MDR TB had been reduced from approximately 20 months to 9-12 months saying that this is the greatest news he has received lately. He said that this would give patients more hope and further encourage them to adhere to treatment.
CHS through the CDC-funded Tegemeza project in collaboration with County Health Management Teams supports a number of facilities in Central Kenya to implement robust TB control activities. CHS also supports the monthly clinical review meetings, which is an outstanding practice of bringing together Drug-Resistant TB (DR TB) patients and their health care workers to review treatment progress.
Similarly, the USAID funded Tuberculosis Accelerated Response and Care (TB ARC) activity supports the National TB, Leprosy and Lung Disease Program to carry out laboratory baseline investigations before a patient is initiated on MDR TB treatment with further follow up during treatment.
Extracted from CHS-Kenya Website