In 2013 alone, approximately 9 million people around the world developed tuberculosis, and 1.5 million people died from the disease. Beyond those numbers, TB and the stigma it creates can frequently lead to significant economic pressures and severe psychological impact.
With the help of our partners at RESULTS, Friends recently had the opportunity to sit down with Ully Ulwiyah, an MDR-TB survivor from Indonesia. She shared her incredible story of how suffering from multiple cases of tuberculosis and seeing friends struggle with the disease’s mental health impact encouraged her to found Pejuang Tangguh, and how, with the help of KNCV Tuberculosis Foundation, a partner of USAID, she is now working to help current MDR-TB patients.
Friends: Can you tell us about your history with tuberculosis?
Ully: I first got tuberculosis when I was 10 years old. It started with a bloody cough, but my parents didn’t know much about the disease, so we tried to treat it with traditional medicine. When I was 12, my aunt, a health worker, told us that I needed to be treated for six months with TB medication, but I did not receive an x-ray to confirm the diagnosis. She gave me a powdered medicine for six months, and I felt sick for the first four months. I was young at the time, and didn’t really understand what the disease was, so I didn’t care much about taking the medicine. When my mom asked if I had taken the medicine, I said yes, but I actually just threw it out. After six months, they did not do an exam to check if I was cured, but I did not have any more complaints.
When I was 16 years old, the disease returned, and I was treated for another six months. I took my medicines regularly until I was cured. My cough returned for the third time when I was 19 years old. I was treated by injections for two months, took oral medications for nine months, and was declared cured once again. Then in 2011, I was diagnosed with MDR-TB, and had to be treated for 22 months.
Friends: Did you experience any side effects from your tuberculosis treatments?
Ully: There were not any side effects from being treated for regular TB, except for feeling a little sick the first time.
While being treated for MDR-TB, I had nausea all of the time. My body was thinner and weaker each day. For the first three months of the treatment, I was very depressed. The doctors said that this was a common effect of MDR-TB medication. I had further psychological effects from MDR-TB, as I was not able to travel to the hospital for treatments by myself and had to sleep in a different room from my children. I was fed up with the side effects and wanted to stop the treatment, but I knew I had to keeping fight on behalf of my kids and family.
Friends: Besides the direct effects from the disease and drug side effects, can you explain how you and your family were affected?
Ully: The Indonesian government (with support from the Global Fund and other partners) covers the cost of doctor appointments and medication for regular tuberculosis and MDR-TB. The disease and treatments had a big impact on my family economically. I was not able to work, so my husband had to support our family. During my treatment, he had to take time off from work to accompany me to the hospital. My sister, Siffa, had been working, but had to resign from her job to help me take care of my children.
Friends: Can you tell us about the group that you are working with now, and how they help people living with tuberculosis?
Ully: I was one of the founders of PETA (Pejuang Tangguh), and am very involved in the organization. I was one of the lucky TB patients that got better, but I heard a lot of stories about MDR-TB patients who have ongoing struggles with their disease. I felt like it was my obligation to fight for a cure, and to help other patients.
PETA is a peer education group of former MDR-TB patients who volunteer their time to help current patients. The organization focuses in particular on the psychological effects of MDR-TB, and we hope that many more patients can be cured if they follow our advice. We go to hospitals twice a week to visit with MDR-TB patients, and patients can call us anytime. PETA also does outreach in the community to fight the stigma surrounding MDR-TB, and work with health workers to provide additional patient support.
Friends: Do you have a message you would like to share with current MDR-TB patients?
Ully: Keep up your spirits and stay motivated. People that have not had MDR-TB do not always understand the changes in our behavior our condition causes. People need to receive more information about MDR-TB to better understand the disease and its impact.
When I left Indonesia, my friends told me to tell people in America that this is our common problem, and that we need to handle it together. As one of the survivors of MDR-TB, I hope that one day the disease can be cured easily and quickly so that it does not have such a significant impact on people’s lives.
If you would like to hear more about Ully, video is available here (at the 1:07:36 mark) of Ully sharing her personal story at USAID and RESULTS’ World TB Day event on March 24, 2015, at the U.S. Institute of Peace.