Umeda and her family live in Shariston, a town near Tajikistan’s capital Dushanbe. Her parents are currently in Russia, looking for work. The 5-year-old girl is therefore temporarily staying with her aunt. That same aunt helps Umeda with her treatment for multidrug-resistant tuberculosis (MDR-TB). She takes her niece to the clinic, and makes sure that she takes all her pills.
Umeda has been on treatment for MDR-TB for 6 months. Her family was initially sceptical. Umeda 's uncle died of TB. Why should treatment work for Umeda? But she started treatment anyway, and her aunt is very happy with the results: "She’s doing so much better. And she looks much better now."
When Umeda got sick, she lost a lot of weight and was very weak. She could barely talk, and had great difficulty breathing. Furthermore, the treatment proved gruelling. Especially since she had very little support in the beginning. She was still in a hospital then, and the staff didn’t have much time to tend to Umeda. The little girl showed tremendous resolve, however, by making sure she took her drugs every day, all by herself. Her explanation is simple: “I knew it would make me better.”
Her treatment still lasts for more than a year. And her resolve has slightly diminished by now. She doesn’t find the taste of the syrup, in which the large pills are dissolved, very nice. To ensure that she does continue to take her medicine, MSF works with special incentives. Umeda has a sheet of paper that has the days of the week on them. For each day that she takes her medication, she gets a sticker in the form of a gold star. She wants nothing more than to fill the entire sheet with gold stars. Of course, Umeda knows full well that she should also take her medicine without any incentives or prizes. "If I stop, I get a fever."
Her aunt will continue to support Umeda. That isn’t always a given. MSF Counsellor Sorroh, who gives psychosocial care to the family: "Some parents do not even visit their sick child in the hospital. Also, it can be extremely difficult to inform people about measures to stop the disease from spreading. There is a large stigma that still rests on TB. MSF is trying to do something about that. And we are seeing improvement, step by step."
People living with drug-resistant tuberculosis (DR-TB) & their medical care providers are calling on the international community to address the DR-TB crisis with better treatment and diagnosis, and adequate funding. Support Their Call to Action - Sign Now at: www.msfaccess.org/tbmanifesto