Fight against deadly sleeping sickness in southern Sudan

On the plane journey I had imagined southern Sudan as dry and desolate, with a population plagued by heat and hunger. But what I saw on my way by car from Maridi to Ibba was a lush green landscape of mango and teak trees. In this region it rains nearly eight months of the year. Grass and papyrus, almost as high as a man, grow along the road. But, despite the greenery, there are noticeably few animals. The Azande do not keep livestock and, moreover, it seems that any beasts have long since been decimated by the war and the tsetse fly.

After an hour and a half of driving we reached Ibba. A handful of mud huts, a dilapidated mosque and a small market under the trees. I discovered later that most of the village lies hidden in the tropical bush.

The MSF hospital stands behind a reed fence. Three small, low brick buildings with thatched roofs. Jens Graupner, the doctor in charge, took me on his daily rounds. We started with the intensive care unit: 50 desperately ill patients on teak beds. Most were surrounded by family members looking after them. Jens stoped beside one patient. The woman in the bed made vague gestures with her hands, as if trying to push something away. Her lips formed unrecognisable sounds as she stared into space, in a trance. 'She's afraid that something will crush her', explained Jens.
'Yesterday she could still talk, but now she's totally confused'. The woman is being treated with Melarsoprol, an arsenic containing drug used for the most serious cases of sleeping sickness.

Empty huts

Jens explained that the course of the disease has two stages.

'In the first few months after the person has been bitten by the tsetse fly, the parasite spreads through the blood and lymph systems. In this stage the patient often suffers from headaches, fever and pain in the joints. It can take months or, in some cases, years before the disease becomes clearly apparent. But after a certain time the parasite penetrates into the brain. The patient starts to hallucinate, becomes mentally disturbed and sometimes even aggressive. The sleep pattern becomes completely disorganised: during the day the person can be overcome by sleep, and at night remain wide awake. Hence the name "sleeping sickness". Finally come convulsions, coma and death'.

We were joined by the medical assistant, Abel, who is from the region. He told us that every family around here has lost somebody over the past few years.

'You see lots of empty huts', he said. 'Hundreds of victims have died. The war has been responsible for allowing the disease to spread. Many people fled and became infected in the bush or across the border in Congo or Uganda. Others harboured the disease among them. But there were no doctors to offer treatment because the healthcare system had collapsed'.

Overflowing tents

MSF began its sleeping sickness project in Ibba in February this year. The 20 medical staff - a doctor, nurses, medical assistants and laboratory technicians - were trained beforehand in Uganda where the MSF has had a sleeping sickness programme for a number of years. The start of the project was rather chaotic. Dozens of patients were brought from near and far, on beds, stretchers and bicycles, creating a Brueghel-like scene with a jostling mass of diseased people. The two tents, which had been set up because the hospital was still not ready, were soon overflowing. The laboratory technicians, Joseph and Anthony, were busy morning to night testing patients.

In order to find out whether somebody actually has sleeping sickness, their blood has to be examined for parasites. Next, the cerebrospinal fluid has to be examined in order to determine the stage of the disease. The doctor and nurse did not sleep for a full night during the whole of the first week. 'But 97 of the first 100 patients were cured', said Jens proudly.

Outside the clinic an old woman shuffled forward, leaning on two sticks. Rags hanging from her half-naked body. ‘Would the doctor have a skirt for her?’ she asked. Farther along, a sick man was vomiting into a ditch. On the ground outside the wards, patients were lying on mats in the shade, talking among themselves. Others were walking around, as they do not have any serious symptoms.

'Some people can go around with the disease for months before clear symptoms emerge', explained Jens. 'They have complaints such as headache, fever and weight loss and so they frequently think they have malaria'.

25 injections

Yesterday 13 year-old Baraka Loronce came to hospital. He was complaining of a headache and had been suffering from fevers for a year. He was brought to Ibba by his elder sister with her baby. His blood and cerebrospinal fluid were tested in the lab and he was found to have the disease in an advanced stage. Now he is sitting in his pink sweatshirt with an Olympic Games design, waiting for the nurse to give him his first injection. I asked him how he got the disease.

'We live near a pool where I fetch water every day. You find lots of tsetse flies there, but no one thought of sleeping sickness until I came here. I've been feeling dizzy for a long time'.

Baraka turned his head as his sleeve was rolled up and the long, thick needle was inserted into the back of his hand. He pressed his lips together against the pain, and I admired the courage with which he submits to the treatment. The course of treatment which he will have to follow lasts 25 days, with an arsenical drug being injected intravenously.

When I saw him a few days later he already felt much better. 'I don't have a headache any more'. He will - I hope - be one of the many who are cured of sleeping sickness.

No vaccine

During the past eight months, MSF has successfully treated 814 patients in Ibba who would otherwise have died. In addition, 7,500 people in the Ibba district have been tested for sleeping sickness. A mobile team visited a large number of villages testing all comers for the dreaded disease. If someone tested positive, a second test was done, and then the patient was asked to come to the hospital as quickly as possible, i.e. to come along in the MSF vehicle.

'The fewer people that have the parasite, the less chance that the tsetse fly has to acquire and transmit it', said biologist Simon Gould who leads the mobile teams. 'It's also important to detect the disease at as early a stage as possible, because then it's still relatively easy to treat.

I asked Simon, a biologist who has been studying the deadly disease for years, whether anything can be done to prevent sleeping sickness. "There isn't a vaccine ", he said. "To keep it under control, you have to inform people about the disease and carry out screening tests regularly. However, we also try to reduce the number of tsetse flies. We do that by placing fly traps at places that attract them: streams, wells and pools where people come to drink and wash'.

Mama Sekina

It is partly thanks to Mama Sekina that MSF came to Ibba. She was the village chief - an exceptional position for a woman in southern Sudan. Everybody remembers her.

'She was extremely concerned about the fate of the people, about the disaster that struck this village', said parish administrator Saverio.

Sekina badgered the highest authorities for help. Successfully, as it turns out. Ibba obtained a sleeping sickness clinic. Tragically, the 75-year-old Sekina was diagnosed with the disease shortly afterwards and treatment in the MSF hospital could not help her any more. Sekina died on 27 April this year. I stood beside her grave - a pile of dressed stones - and read 'Here lies Mama Guliana queen of the Azande'.

Administrator Saverio says 'We are very grateful to MSF. This village was written off, but with your help many lives have been saved. That was what Sekina wanted, for this village to survive. Her efforts have not been in vain'.