Daw Khin Khin, a 49-year-old senior nurse at the Mandalay General Hospital, led a fulfilling life caring for patients in her assigned ward. However, in 2021, her life took an unexpected turn when she was diagnosed with multidrug-resistant tuberculosis (MDR-TB). Her journey to receiving a TB diagnosis was challenging, and the subsequent treatment process proved to be arduous.
"In early 2020, I began feeling unwell, experiencing generalized aches and pains. Despite consulting numerous doctors, my symptoms did not lead to a definitive diagnosis. I spent months going back and forth between hospitals and clinics. By mid-2020, I started losing weight and developed a persistent cough. A chest X-ray revealed signs of chest infection, and I underwent several courses of antibiotics. However, my cough worsened, and my health continued to deteriorate."
"Eventually, during my journey back home after a ten-day long night shift, I fainted and broke my arm. While hospitalized, the doctor decided to review my chest X-ray, which revealed tuberculosis-related symptoms. In November 2020, I commenced standard TB treatment. Two months later, my sputum test results confirmed that I also had MDR-TB. I was switched to a regimen that would require at least 18 months to complete, marking the beginning of my MDR-TB treatment journey."
"The medication regimen consisted of numerous pills. I felt sick after the second day of taking the drugs, experiencing frequent vomiting. My appetite diminished, and I grew weaker. The medications intended to alleviate my symptoms offered little relief. Gradually, I began to feel slightly better, but then I started experiencing numbness and pain in my legs. The doctor substituted one of my prescriptions with another, which reduced my leg pain but brought back the nauseous feeling. Fatigue and disorientation returned, confining me to bed for most of the day."
"In May 2020, my depression and anxiety intensified due to my illness and the suffering it caused. I sought help from a psychiatrist for mood swings and insomnia. I worried that my treatment might not be effective or that I might not survive. I questioned whether the medications were improving or worsening my condition. With no alternative but to continue, I persevered, and now, in 2022, I am nearing the end of the regimen."
"As a nurse, I was trained to assist others, but having TB taught me to appreciate the support of others. Without my family, I wouldn't be here today. They stood by my side throughout the entire ordeal. There were moments when I felt like giving up, but my family encouraged me to persist with my medication."
"I also consider myself fortunate to have encountered The Union's field officer. She provided unwavering support, addressing my concerns and offering a compassionate ear during difficult times. The Union's counselor regularly checked on my well-being and needs. When The Union's Clinic opened, I found it conveniently located near my home. The clinic staff reminded me of my upcoming follow-up visits, and I appreciated the comprehensive care I received, including eye screenings, counseling for drug side effects, and result explanations. Previously, I had to make multiple visits for consultations, medication supplies, and follow-up tests. The Union's clinic has now streamlined the process by providing blood tests, sputum transport, chest X-rays, and ECGs in one place. I also receive my monthly medication supply, including vitamins and anti-TB drugs, during my appointments.
The clinic has become a safe space where I can share my concerns and receive exceptional care. The Union's team also regularly screens my family members for TB, and they underwent chest X-rays at the clinic, thankfully confirming their TB-free status."
With funding support from the Global Fund to Fight AIDS, tuberculosis and Malaria and the USAID HIV/TB AIS activity, The Union is steering the CBDR-TB programme (Community-Based Drug-Resistant Tuberculosis programme) and its strategies go hand in hand with the national scale-up plan to end TB by 2030. The Union assists DR-TB patients with 8 social protection support packages such as medication, specialist consultation, investigation, hospitalization, and so on. Peer volunteers from local communities provide health education (HE), and psycho-social counselling to patients and their families. Moreover, they carry out infection control activities such as disseminating hand sanitizers, handkerchiefs, soaps, and antiseptic liquids. Along with field staff, they pay regular home visits monthly or, in certain remote areas, bi-monthly.
"Now my treatment has come to an end. My health is improving and I am filled with immense joy since I have made it. Thanks to all those around me who have been lending their supportive hands along my TB journey. Without them, I would not be here.
TB is undeniably a debilitating disease, and the side effects can be challenging to endure. Practicing mindfulness, meditation, and performing good deeds helped me navigate this long and demanding treatment process. Stay determined and focused on getting better. I also urge family members to be understanding and supportive of all TB patients because their journey is immensely challenging. By rallying the support of family, friends, and healthcare professionals, we can conquer the fight against TB."
*Names changed to protect individual identities.