Disease Diaries

Ten tuberculosis patients from across the globe are chronicling life with their illness to educate the rest of us
by Staff, Utne Reader
November-December 2011
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Image by Flickr user: esparta / Creative Commons


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The word tuberculosis may evoke 19th-century tales of pale-faced, consumptive patients seeking respite on a mountaintop sanatorium. But a new story has emerged, writes Sarah Boseley at Guardian.co.uk (June 30, 2011). Millions of people worldwide have a powerful strain of the disease, termed multi-drug resistant tuberculosis (MDR-TB), and 440,000 more acquire it every year.

Doctors Without Borders has come up with a novel way to update our TB education: a blog, in the patients’ own words. “I could try to paraphrase some of what my patients go through,” writes tuberculosis doctor Philipp du Cros, who conceived the TB&Me project last year with the UK medical department, on the British Medical Journal blog (July 12, 2011). “But never having taken the treatment myself, I don’t think I’m in the best position to do that.”

So far 10 people have signed up to write or orate the new history of TB, from places as disparate as India, Swaziland, and the Philippines. Patients include Grace Lamwaka, an agriculture student; Mildred Fernando, a certified public accountant; and Christiaan Van Vuuren, a.k.a. the Fully Sick Rapper, who entertained himself during seven months of quarantine by making YouTube rap videos.

MDR-TB treatment is long (typically two years), intensive (twice-daily dosages of multiple-drug cocktails), and expensive ($7,000). Weakened immune systems are particularly vulnerable, making TB increasingly common in HIV patients. The drugs are outdated, writes du Cros, and the diagnosis stigmatizing. By increasing awareness, Doctors Without Borders hopes to improve medical care. So do the patients. “I strongly believe the way TB patients are treated by the community has a direct impact on the healing process,” blogs Mariam Davtyan, a 21-year-old Armenian student researching the psychological treatment of tuberculosis.

168-cover-thumb.jpgHave something to say? Send a letter to editor@utne.com. This article first appeared in the November-December 2011 issue of Utne Reader.








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