Little known Buruli ulcer disease on the rise

With her left arm amputated and her chest eaten away by large festering wounds, little Diane Akissi is disfigured for life. The eight-year-old girl suffers from Buruli ulcer, a little-known tropical disease that afflicts mainly children and youths with potentially devastating consequences. The infection usually starts with a painless swelling on the skin, but causes massive ulcers on legs and arms if left untreated. Experts have identified the bacterium that causes the disease, which is endemic in a sweep of African countries from Guinea in the west to Uganda in the east, but nobody knows for certain how it is transmitted. Every year, the disease leaves scores of Ivorian children scarred, disfigured or permanently disabled - like shoddily clad Diane, who shies away when people look at her. Six months ago, Diane’s mother took her to the Kongouanou clinic in central Cote d’Ivoire. But seeing the ulcers on the little girls’ arm, Maria Santos Silveira, a Spanish nun who runs the clinic, saw it was already too late: Diane’s disease was in such an advanced state that the arm had to be amputated. “It was sad but we had no choice,” said Cecile Akissi, the girl’s mother. Some 22,000 cases of Buruli ulcer have been reported in Cote d’Ivoire since the disease was first discovered here in 1978. And the numbers are rising. At the Kongouanou clinic, one of two functioning clinics nationwide specialised in Buruli ulcer, up to 12 new patients each month come desperately looking for help. “The number of patients virtually grows by the day,” said Sister Silveira, a dedicated energetic woman. “We had 49 patients last month, this month we have 53.” Most cases of Buruli are found among children between 3 and 18 years old, said Henri Assé, programme director for Buruli with the World Health Organisation (WHO). But adults are also at risk, especially those who live near stagnant or slow flowing water, ranging from creeks to flooded agricultural land. Out of 168 patients treated at the clinic over the course of last year, three died of exhaustion or a suspected HIV/AIDS-related illness during their stay in the clinic. Sister Silveira said patients usually arrived in terrible shape because they had sought treatment too late - out of ignorance, shame, poverty, or for fear of surgery. “I often can’t sleep,” Silveira said. “At night, they knock on my door when they are in pain and I feel I should be with them and keep them company. After all, they are my family.” When patients finally seek help, curing them is expensive. In most cases, surgery is required to cut away dead flesh and cover the wound with a skin transplant. After surgery, the patient must stay in hospital for at least two months. “The costs of treatment are enormous,” said Silveira. “But they have to stay with us so that we are sure they take their medication. The children who are in school get reading and writing classes so they don’t miss out too much.” The Kongouanou clinic was set up in 1988 and financed by a Spanish non-governmental organisation. But the steady arrival of new patients forced Silveira to look elsewhere for help. In 2003, the French peacekeeping force Licorne stepped in to provide medical treatment to the patients. And since then, a French surgeon performs skin transplants in the rudimentary operation room. Cote d’Ivoire has been split into a government-controlled south and a rebel-held north since mutineer soldiers tried but failed to oust President Laurent Gbagbo during several months of fighting in late 2002. Some 10,000 French and UN peacekeepers patrol the buffer area separating the loyalist army from the rebels. Although the village of Kongouanou lies in government territory, some Ivorians travel from the rebel north to get treatment at the clinic. But Silveira pointed out with regret that conditions were far from luxurious as she showed the improvised kitchen, the surgery room, the canteen, and the three large rooms for family members. “We have only 30 beds so some patients have to sleep on mats on the floor,” Silveira said. Weary and silent patients, most of them children, were sitting in wheelchairs or on plastic floor mats. Cries of pain could be heard from the nursing room. But currently, water supply tops Silveira’s concerns. The village of Kongouanou has a single water tower, which she said was not sufficient because the clinic needed vast quantities of water to clean the wounds of the sick. “We have warned the local authorities several times,” she said, “but to no avail.”