MDR-TB Patients Share Their Stories

Alison Root — July 15, 2011 – 10:54 am

Multidrug-resistant tuberculosis (MDR-TB) is daunting. Full stop. Enduring the toxic treatments and social isolation necessitated over the two years of treatment is something most of us cannot even imagine. Increased global attention to MDR-TB and intimidating statistics referring to the 440,000 cases of MDR-TB each year still obfuscate the heart of the issue: that going through MDR-TB treatment is something few of us understand.

As ACTION partner RESULTS UK wrote last week, Médecins Sans Frontières (MSF or Doctors Without Borders) launched a new blog to give us a glimpse into the lives of those living with MDR-TB.  Called TB & ME, the new blog hosts entries from MDR-TB patients in India, Uganda, and Swaziland which humanize the experience of undergoing treatment, highlight the gaps in service delivery, and call for new tools and drugs to prevent and treat the epidemic. Patients don’t just blog, they also respond to each others’ entries - forming an online support group around the world.

In a rather upbeat entry, Churchill Opera, a 34-year-old man from Kitgum, Uganda writes, “Since I last wrote, the treatment that I’m taking has shown improvement. The drugs that I am taking are now giving me more energy. I’m very happy about this.”

Opera’s entry ends on a more serious note: “Most of the time when I wake up in the morning, I [have] been experiencing joint pain and have not slept well. So, when I wake up, I don’t have much energy, I’m weak and cannot move around. The thing is, I feel like moving around and doing things. According to doctor, this is a side effect of the drugs I am taking and will go. That is why most of the time, if I take my drugs, I just lie on my bed. I’m tired all the time. I wish I could get up and sweep and clean my compound, but when I try, I find I just don’t have.”

ACTION is excited about MSF’s venture and commends the work they are doing to support and treat MDR-TB patients worldwide. Everyone undergoing MDR-TB treatment has a powerful story to tell andwe look forward to learning from these select stories and connecting our advocacy work to this great support network.

TB & ME joins the ranks with other useful online tools that educate the global community on the realities of TB and what actions are needed.

Read the TB & ME blog

Interact and learn about TB at the epidemicTB website