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TB Manifesto

19 Mar 2013

Few weeks back I did a manifesto, alongside Dr Jenny and XDR-TB patients who attend the support group here at Lizo (Nobanda). We wrote the manifesto so that we could get a word out there mainly on the things that we as patients demand from the people responsible for giving treatment to whose affected and infected with TB.

Well firstly we sat down and looked at what kinda attention DR-TB needs. For instance we talked about the urgent need to reduce the medication, 20+ tablets, those medications which makes you even more sick than you already are, and also to reduce them by making stronger drugs which we will be able to take not for 2 years or 3 years but only a month. This would be just fine so that we can continue with our lives. I hope the manifesto will be taken very seriously and land on the right hands so that something will be done with immediate effect.

And talking about side effects of the drugs, I noticed that I have not been very clear about the deafness part and very little people know that the medication makes you deaf... I did mention it a couple times before, well seems like not everyone is taking it seriously. For starters I for one have to start afresh if I want to study further again, I have to learn a new language which is signing, and from this point I have to adjust to the ‘’deaf world’’. It’s like learning something totally new, starting your life back on a very different planet...

 

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