[These questions were put to Grace via the Médecins Sans Frontières / Doctors Without Borders facebook page]
Q. What medicines are you taking and what side effects do you experience? Like how many tablets a day and how do you feel when you take them?
Grace: The side effects when I take the drugs? The first thing is it brings body laziness, like I have to sleep, immediately after I take the drug. Like I’m just up from the bed. That’s why I go back to bed. Then it always brings body warmness, so much that I sweat and that stresses me too much!
Q. How do you pay for the drugs and where do you get it from?
Grace: In fact with the money, this is a voluntary treatment given by the organisation Médecins Sans Frontières, so they are responsible for the treatment.
Q. How can people learn about TB and HIV? For example, how do you think people should be educated, so that they don’t stigmatise – like HIV always goes with TB and so forth?
Grace: Actually that one is a very difficult these days, because to bring people to know that this is TB and this is HIV is very difficult. In one way, TB is now seen as the same as HIV because of the percentage of people which are HIV positive, that also suffer with TB. So, it depends how somebody understands… People can think ‘Could it be that what Grace has told me is a sure thing? That she’s there just suffering from TB?’ Because when you relate the side effects of TB to a person who has HIV, they are almost the same. But people must understand, one thing is HIV and another is TB. My family know I am negative for HIV simply because that they have taken my sample for HIV testing and they know that I am suffering from only TB. So the only definite way to make people understand that TB and HIV are different diseases is to go together with somebody to get your blood tested.
Q. What do you think you’ll do once you’re cured? What do you think you’re going to do afterwards - do you want to also help people understand about it like the whole TB HIV part?
Grace: It is very difficult to work with the community, very difficult to make the community understand. However you try to explain it to them, they will not understand, they will stick with what they think they already know in their mind. So this is so difficult to get them to forget what they think, forget what they’re taught. Because I know my status, the people I am working with, they know my status. Maybe out of 100 people only maybe 60 may believe, the other 40 will keep on the thinking the way they did before.
Q. Do you think in the future you may do something to help educate people about TB?
Grace: No I cannot do that.
Q. Do you think that some time the Ugandan government will also have MDR TB drugs available? When do you think this might happen?
Grace: Actually, that’s one I don’t know really. Where I did the test, they were also telling me that to make the government get the MDR drug it would take something like 20 years, because it is very expensive.
Q. Do you also take painkillers? Like paracetamol or something like that?
Grace: Yeah painkillers I do take. But these days I’m fit and I don’t get any body pain, I’m physically fit this time. But those times when I was still having injection treatment there was a lot of body pain. Actually I was so sore and there were some other serious side effects like in the legs. SO there were some other drugs they were giving me to remove the pain I was getting. But these days I am not taking any painkillers. I only take that main drug they give me for the cough.
Q. What’s your favourite food? What do you like to eat nowadays with these drugs? Are you OK to eat? And do you like to cook? Do you know how to cook?
Grace: Actually, I eat all the varieties of food people do eat. But too many drugs means you find that after some 4 or 5 days at least, I should take something to bring back my appetite. Maybe from Monday to Friday or Saturday at least there will be some meat. If it is not there, I make do with what is available. But always the drugs are giving me a lot of difficulties in food.
Yeah I cook, I know how to cook, I cook. Even during a long time like this I help my sisters, I always help them in the kitchen.
Q. When you first got MDR TB and felt weak, who looked after you?
Grace: At the beginning, my mum looked after me. Even now she is the one, actually. I’m taken care of by my parents and then the family members. To start with, they didn’t disturb me. But these days they’re seeing some energy, so sometimes they’re requesting me ‘Go and do this for me, go and do that’. The only things I’m not doing is fetching water because it’s too heavy. Maybe if I wanted to go then I could, just with the 10 litre, because, I found out when I carry, the body is just too weak. So I am trying to avoid doing it but maybe next year I’ll see. Once I am well we will see but not now...