While I was on my pre-XDR treatment, I didn't try scuba diving as I knew I was too weak and also, I was scared my lung would burst or something (not...
Hi for a long time! I intended to write sooner after my last post in June but my summer went badly so I couldn't. Since the last post my medication...
Being late diagnosed means I took the wrong medication for a very long time, that in fact I experienced the side effect of the Kanamycin injection used for MDR-TB, it got me deaf.
Hello… my name is Zolelwa Sifumba… And I’m a Multidrug resistant TB survivor… :) I can’t believe it either... I made it :) … 18 months of that...
Being diagnosed with DR-TB is a double tragedy. You have to deal with the stigma as well as the agonizing medication.
TB&ME is a collaborative blogging project by patients being treated for multidrug-resistant tuberculosis (MDR-TB) in locations all around the world. They are writing about their experiences of living with MDR-TB and the treatment that they receive. This treatment can often involve taking upwards of 20 pills a day for 24 months and suffering many painful side effects from the toxic drugs.
TB&ME has been launched because MDR-TB is a neglected disease. Very little money has been put into the research and development of diagnostics or new, improved treatment and people who are infected by the disease have no option but to take drugs which are painful and leave them feeling weak every day for a very long time. TB&ME gives MDR-TB patients an opportunity to tell the world about the issues which affect their lives, about how treatment and services could be improved and how it feels to have this disease.
It also provides an opportunity for patients to tell the world that MDR-TB exists in their own words, that it is a global problem and to share their experiences with others who might be in the same position.
The TB&ME project is run by Medecins Sans Frontieres/Doctors Without Borders (MSF). If you would like to get in touch for any reason, you can do so by email (email@example.com) or via twitter (http://twitter.com/msf_field)… We’d love to hear from you.
Important to note:
Many of the patients sharing their stories (especially those in MSF projects) do not have access to computers or the internet. In these cases, the patients record their posts and it is translated/transcribed and posted by MSF. The patients’ stories may be edited for comprehension in English, but apart from this, they are unedited. The only exception to this is where information in a patient’s blog post may compromise the security of MSF patients and/or staff. In this case the testimony will be discussed with the patient to find a solution.
Where patients in this situation receive questions and comments, any answers they choose to give will be recorded and transcribed, prior to posting with no editing, apart from spelling and grammar.
Patients are taking part in the TB&ME project on a voluntary basis having been identified by MSF field staff as people who might be interested in sharing their stories. If, at any point, a patient becomes to ill to continue or decides to leave the project for personal reasons, MSF accepts this without condition and has made it clear to patients that this will in no way affect the care they receive.