Uganda: African sleeping sickness

African sleeping sickness is insidious and deadly. The patients' long ordeal is made even more difficult by social ostracization. Drugs used up to now cause almost unbearable side effects. But there has recently been hope in the form of a new therapy.

"I am proud that my head is functioning again thanks to the treatment," says Moses. A smile creeps across the twenty-eight-year-old farmer's face – reflecting his happiness – and then suddenly slips. Uncertain, he tries to regain control of his features. "Still, it will take another one or two years before I'm really healthy again," he explains. His eyes wander over the fresh green of the sunlit beds where his family grows corn and cassava. "I can't clear the fields yet, because my hands are too weak and keep trembling. I don't yet know what I can do for a living."
Moses suffers from the aftereffects of African sleeping sickness. When he speaks, his tongue and lips twist and turn the words, as though they were too big and bulky for his mouth. That's just one of the symptoms of the disease, which begins with headaches, joint pain, fever and abnormal fatigue.

Moses, 28, farmer

"Most patients think it's enough just to take pills to deaden the pain," reports Olema Erphas, 38, clinical officer and director of the Omugo Health Center in the extreme north-west of Uganda, where Moses was treated. "The fever is often wrongly diagnosed as malaria, and the corresponding drugs are ineffective. The physicians then have no idea what to do next. This is followed by a long ordeal and eventually the death of the patient."
Olema has experienced this often enough. Since 1995 he has been working at the Omugo Health Center, which was expanded at the time into a clinic for sleeping-sickness patients by Médecins Sans Frontières. The disease, which had seemed defeated since the nineteen-sixties, had flared up again in Uganda. For ten years the self-styled resistance fighter Joseph Kony and his Lord's Resistance Army had terrorized the people in the north of the country, robbing, pillaging, raping, torturing, murdering – and kidnapping thousands of children, abusing them as soldiers or sex slaves. 90 percent of the population were displaced. The deep-red, fertile farmland has become overgrown with bushes again, turning it into a perfect habitat for the tsetse fly. Even now hardly anyone in Uganda knows that its painful sting transfers sleeping-sickness pathogens into the human body.

Olema Erphas, 38, clinical officer and director of the Omugo Health Center

The farmer Yusuf, 38, who was infected in this way as a young man, is pleased: "Fortunately, there is now a European team who are hunting the tsetse fly." Staff from the Liverpool School of Tropical Medicine have had traps made out of blue and black fabric that has been impregnated with insecticide. These colors, together with fast movements, stimulate the aggressive insects to attack. Yet Yusuf is wearing a bright blue shirt with a black pattern, even though he has been told about the cause of his illness.
Obstinacy seems to cloud the people's minds like the dark clouds that hang between the forestcovered mountains and are now opening their flood gates as usual in the rainy season. Children in colorful school uniforms play soccer in the pouring rain. The dusty red, potholed tracks turn into soggy skating rinks. Everywhere, deep puddles form perfect breeding grounds for the tsetse flies.
Yusuf shelters under the palm frond roof of his house made of air-dried bricks. It stands exactly where he was stung in 1993: in the lush greenery of the overgrown banks of a small river. The preferred habitat of the fly – and all of the farmers. This is where they clear and cultivate their land, where they fish and hunt, fetch water and collect firewood. These tasks are mostly performed by women, making them especially vulnerable. And they carry their small children with them on their backs in colorful cloths.

Yusuf, 38, farmer

This is exactly what happened to nine-year-old Adomaté seven years ago. She is nothing but skin and bones, sleeps almost constantly, does not eat, does not talk. She can barely move, let alone stand upright. Her parents keep watch at the head and foot of her bed in one of the wards in Omugo. Desperate, exhausted and without hope after a years-long odyssey of unsuccessful treatments. Like almost all the local farmers, they live on subsistence farming. If they take care of their daughter, they can't cultivate their land; so they go hungry. Haltingly they confess to having consulted a traditional healer, a witch doctor.
"The healer had a vision," Adomaté's father mutters. "That I had made myself guilty because, after my mother died, I was too poor to make the payments to my relatives that are prescribed in our culture. He recommended that I should sacrifice three chickens and hold a formal prayer with my relatives. 'If we prayed well enough, my daughter would recover,' he said. But the symptoms got worse."

Adomaté, 9, patient, with her mother

Olema, who recently started treating Adomaté, waits for the story to end, visibly indignant. For years he has been fighting the superstition that sleeping sickness is a misfortune caused by one's own misconduct or that of one's ancestors. An especially popular version is one in which a groom has not paid his wife's family enough dowry. Another widespread rumor is that the disease is transmitted by sexual intercourse, which often leads to divorce.
Olema is more satisfied with the child's progress than with her parents' behavior: "Adomaté's condition has improved markedly. She is responding to speech, can open her eyes and sometimes even moves. She is being artificially fed with high-energy preparations. This creates a good basis for the new combination therapy with the drugs nifurtimox and eflornithine."

Olema Erphas with Adomaté and her mother

The team at Omugo Health Center was instrumental in the discovery of this therapy. After physicians from Médecins Sans Frontières had correctly diagnosed Yusuf in the mid-nineties as one of the first in Omugo, they treated him with melarsoprol. This arsenic compound was the only drug available against the second stage of the disease, from which Yusuf was already suffering: the pathogens had penetrated into his central nervous system.
"At first I felt a horrible itching all over my body. My skin was as white as ash from all the scratching," he recalls. "Later, I lost a terrible amount of weight, had nightmares and started talking to himself. I would start arguments and fights for no reason, so that people began to be afraid of me. Then I became apathetic and was falling asleep all the time – sometimes even at work or in the middle of a conversation." This is how destructive the disease is, and how toxic melarsoprol is. It's not approved in Germany because it has such side effects as skin rashes, nausea and vomiting, cramp, fever, fainting, and blood in the stool. And as if that wasn't enough, about five percent of patients die not from the disease, but from the drug.

Yusuf, 38, farmer

So several NGOs got together in 2003 to finally find an alternative. In clinical studies they tested the combined use of the nifurtimox and eflornithine, drugs which had originally been developed to combat Chagas disease and cancer. "From 2005 to 2008 we, too, conducted such a study," says Sanda Tuteu, nurse and member of Olema Erpha's staff at Omugo Health Center. "All the patients had to be monitored very closely because of the high risk." Triumphantly the lady in her mid-forties holds the drugs aloft: "But there are no more side effects now, and we have managed to dramatically shorten the treatment. We are incredibly proud of the new therapy; all the patients are recovering and will be healthy and happy again."

Sanda Tuteu, 44, nurse

The best example is eight-year-old Samuel. "My son suddenly complained of pains," says his mother. "He would always hold his head to one side and raise one arm. When he also began to talk incoherently and behave erratically, I knew we urgently needed help." The family comes from Sudan. Nevertheless, Samuel's doctor said the long journey to Omugo was his only chance. There is still no other health center far and wide where sleeping sickness can be treated. So Samuel's mother and siblings have been camping for two weeks in the grounds of the hospital, like the relatives of the other patients. They sleep outdoors, cook over an open fire, balance huge canisters of water they bring from a well on their heads, and wait for Samuel to recover. The treatment is free, but the patient's relatives are responsible for nursing and supplying the patients with food. Samuel lies in bed next to Adomaté, or rather he should be lying there. But instead he is jumping around between the patients and nurses, making faces, shouting for joy, telling incomprehensible stories. Sometimes he grabs a hand to lick it, or pulls someone outside for a walk without a destination and is constantly asking: "How do you do?"

Samuel, 8, patient, almost cured

He himself is feeling a lot better. In two days he will be discharged – even though his behavior still shows symptoms of the disease. In six months he must come back for a check-up, just like Moses, who also stands out because he still speaks strangely and can't coordinate his movements. Because the victims of sleeping sickness often behave strangely, they are regarded as jinxed, and people avoid them. Moses is lucky: his family, friends and neighbors stuck by him from the outset. Their support, affection and warmth are tangible. Stronger even than the heat of the sun, against which they place a chair for Moses in the shade of a huge mango tree full of ripe fruit. He sits down there as they gather around him. Then he says a sentence that applies to himself, to the fight against sleeping sickness, and hopefully also to his beautiful, battered country and its friendly people, who have been so deeply terrified by their history: "I've not fully recovered yet, but it's gradually getting better."

Moses, 28, farmer, among his relatives and friends

(Report, Photos and Podcast by matias boem, 2012)