In Sudanese hotbed, rare diseases thrive

Thomas Crampton/ International Herald Tribune

KACNGUAN, Sudan, Dec 18, 2003 — She may live in a country tormented by famine and drought, but food and water are what frighten Martha Halima.

Faced with a meal or a body of water, the girl’s vision often blurs as she plunges into a bizarre trance.

“A black cloud comes in the shape of a human running toward me,” said Martha, 13. “I run to my father, but usually wake up on the ground.”

The fits that Martha suffers are from a new illness known as nodding syndrome. The mysterious ailment, however, is only the beginning of her problems.

Worm-filled nodes characteristic of river blindness, a different and virtually eradicated disease, have swelled up one of her eyelids.

In suffering from two of the world’s rarest ailments, Martha personifies the health crisis faced in southern Sudan, a region isolated by decades of civil war that has turned into a repository of emergent diseases.

“Southern Sudan has the highest concentration of neglected diseases in the world,” said Nevio Zagaria, leader of the World Health Organization team charged with the elimination of communicable diseases. “Not only do the people of Sudan suffer, but the diseases there pose a health threat to neighboring countries while also undermining global efforts to eradicate certain diseases.”

Southern Sudan’s cycle of floods, drought and civil war create a uniquely disease-friendly environment.

“The combination of semi-desert areas and vast swamps,” Zagaria said, “are highly hospitable for vectors of tropical diseases.”

Another disease found in Sudan is caused by the Guinea worm, a microscopic parasite present in stagnant water that grows as long as a meter, or more than three feet, when ingested by humans. The worm takes up to a year to emerge agonizingly through the skin; it can then be removed with the aid of a twig tied around one end.

Ninety-five percent of the world’s 50,000 cases of Guinea worm disease are in southern Sudan, according to Zagaria, but it can be easily prevented by filtering drinking water.

Other rare diseases in southern Sudan include visceral leishmaniasis, a parasite spread by sandfly bites that infests the spleen and liver, and sleeping sickness, caused by a parasite transmitted by tsetse flies that crosses the blood-brain barrier to infest the central nervous system. Both diseases cause irreversible damage and, without treatment, death.

Diseases common to many impoverished tropical regions also run rampant in southern Sudan, like malaria, tuberculosis and leprosy. Rates of HIV infection are thought to be low because of the region’s remoteness, but civil war has prevented scientists from getting a clear idea.

Nodding syndrome remains the most mysterious of the illnesses, with scientists baffled by its source and unable to describe the disease fully. Besides fits of nodding, affected children stop growing, become mentally retarded and eventually die.

“We do not know the cause of this nodding syndrome,” said Martha Anker, a scientist at the World Health Organization who has studied the disease. “We do not know if it is spread by infection, environmental factors, food or anything else.”

It was first identified two years ago, but southern Sudan’s isolation and strife have hindered research.

“You cannot treat people without a guaranteed steady supply of drugs,” Anker said. “Sudan’s extreme lack of a health system also hampers scientific progress on understanding this syndrome.”

The ins and outs of science, however, are of little concern to young Martha Halima, whose father said her illnesses had effectively killed her already.

“We consider her dead since she cannot leave and get married,” said her father, Meen Majak. “It is better for her to die than infect others.”

Despite his harsh words, Majak has made desperate attempts to cure his daughter. He has walked her to the nearest hospital, sacrificed a prized black goat along with a red hen, and even allowed a local healer practicing traditional medicine to drag her naked three times through a giant stinging termite’s nest.

“Traditional medicine is the last chance to save her,” Majak said. “If this does not work, she will soon drown during a fit in the river.”

Traditional medicine is often the only choice for many in southern Sudan. Just three doctors and 59 nurses serve the half-million people of Rumbek County, where Martha Halima’s village is.

While some traditional medicine practitioners thrive on exploiting credulous customers, many would prefer to give up their trade.

“I would stop treating people if modern medicine were available, but I must take care of people for now,” said Kuei Ruec, a traditional healer in the village of Gap, which can be reached from Kacnguan by a one-hour plane ride and a four-hour drive across deserts, swamps and rutted paths.

Bleeding, crocodile soup and herbal concoctions are among his treatments. He also uses a five-year-old teaspoon-size knife, with scant regard for basic hygiene.

“When I see a swollen place on the body I take it out with a knife,” Ruec said. “I clean the knife between each patient by wiping it in the sand.”

A brief visit to a hospital in southern Sudan explains why many may prefer such an experience with a traditional doctor.

The Alpha Civil Hospital, a series of low mud huts in the town of Billings, resembles an abandoned tribal camp, yet it offers the highest level of medical care in southern Rumbek County.

With many walls propped up by sticks, patients prefer to sleep outside amid malarial mosquitoes.

“Termites are the biggest problem for our hospital,” said Elijah Makender, the doctor in charge. “They eat through the poles and thatch roof of every structure each year.”

Other problems include shortages of medical tests, basic drugs and even food.

“I sometimes do not eat for several days,” said Ayen Dong, 35, who has spent four months in the hospital recovering from tuberculosis. “Begging in the village for food is difficult because I am already tired.”

The operating theater’s hygienic improvements consist of a plastic sheet to prevent the drizzle of thatch from falling into open wounds, screens to keep out mosquitoes and the only washable concrete floor in the town.

“Please tell someone to send drugs to treat people,” Makender said. “We have decided there is no reason to test for a disease when we only cause panic and cannot help the patient.”