Buruli is a spectacularly crippling skin condition that affects thousands of new victims every year, mostly children under 15. How come we never hear about it? Because European countries are thankfully spared, unlike Australia, South America, some parts of China and, above all, western Africa, where it is most widespread among poor, rural communities living near rivers, lakes and swamps.
Also because buruli, despite all its attendant horrors and stigmas, is usually not deadly – a mixed blessing that causes it to be regarded as less of a priority than other tropical illnesses, like malaria. Of all the poor cousins of modern medical research, buruli is one of the poorest.
“Nobody’s interested,” laments Professor Françoise Portaels, a 65-year-old Belgian scientist who has just retired from Antwerp’s Institute of Tropical Medicine (ITM). She herself is a notable exception, having devoted four decades of her life to understanding and fighting the disease.
A mycobacteriologist, Portaels specialises in illnesses caused by certain types of bacteria. She has visited Russian prisons to study resistant strains of tuberculosis, and hunted wild fauna in the southern United States to try and account for the few remaining cases of leprosy in the region (her suspicion is that many armadillos are affected and pass it on to humans).
But buruli, which is caused by a related germ called bacterium ulcerans, was always her pet subject. What drew her to it was precisely the general lack of interest, and that sufferers are so young and vulnerable: “I’m also a mother,” she points out.
Known as Tefoun-Tefoun (“whitish, cotton-like wound”) in Benin, Hella Gbonyo (“ugly disease”) in Ghana and Lupi Lupi (“wound that does not heal”) in Uganda, buruli first came to the attention of western nations at the end of the 19th century. Portaels came into contact with it in 1970, when, as a young researcher, she moved to the Congo with her husband for a few years.
Her chief contribution was to locate bacterium ulcerans in a water insect, a task that was made complicated by the inadequate technologies available at the time and ended up taking nearly 40 years. The discovery was an important breakthrough, though, as it established that buruli is caught through contact with stagnant or slow-moving water – although exactly how that happens remains a mystery.
“It’s taken a lot of faith,” Portaels says, looking back on all those years, “but faith of the right kind that comes with humility and open-mindedness. You need to let go of your convictions sometimes and accept that you are on the wrong track. That’s how you keep making discoveries…all your life.”
Buruli is now treated with two antibiotics and can often be cured if caught early enough. There’s even talk of a vaccine. The disease, meanwhile, is receiving more attention and subsidies – a Swiss foundation has recently launched the research programme Stop Buruli, which involves the ITM and six other laboratories around the world. These advances raise hope that buruli can be, if not fully eradicated (“we can’t,” as Portaels puts it, “clean up every lake in every affected region”), at least brought under reasonable control.
But that won’t happen with science alone. “The communities need to be educated,” Portaels insists. “And it’s pointless telling them to stay away from rivers and lakes when they have no access to clean water.” Getting them to seek early medical help, a key condition of recovery, is another challenge: “They know they’re sick, but this is just one of their many ailments. Sometimes the nearest hospital is 20 kilometres away, and the only way to get there is to walk.”
Through the years, “I worked with my brain and with my hands, but mostly with my heart,” Portaels continues with a tremor in her voice. “I tried never to forget the patients beneath the hard facts and the scientific bickering and rivalries. They’re really what kept me going.”
Although her team at the ITM will continue with the research, and she has been granted two emeritus professorships that will enable her to stay in contact with the field, Portaels clearly regrets leaving the job half-finished. Parents who watch their children return to school on their own two legs after a simple course of antibiotics probably see it differently.
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