Two days ago I got back from Old Fangak, a tiny town in Jonglei province on the banks of the Zaraf River, a branch of the Nile. Because I am on a self-proclaimed sabbatical, and because I have wanted to visit my friend Jill Seaman who treats tuberculosis and Kala Azar in South Sudan for years, I just took off and went there, and now, many mosquito bites later, I am back.
South Sudan is the newest country in the world, having achieved independence July 9, 2011 after decades of civil war in the Sudan. The politics of independence are complicated, involving routine marginalization of the sub-Saharan population of the south by the Arab north. There are also rich oil reserves in South Sudan which may help fund infrastructure improvements eventually.
I visited Juba, the capital city, briefly and spent the vast majority of my time there in the town of Old Fangak where the hospital and medical clinic are located. Two weeks and a bit and basically one small town do not make me a South Sudan expert. Still, it was quite the trip and both interesting and valuable on so many levels.
The hospital and the diseases
Jill Seaman has worked as a physician in Sudan for decades, originally for Doctors without Borders (Medecins sans Frontiers, MSF) and then through her own organization, Sudan Medical Relief. She works as an emergency physician and family practitioner in Bethel Alaska to help fund the project and is supported by various governmental and nongovernmental organizations including the Alaska Sudan Medical Project which arose in Bethel in response to her work. I had the opportunity to work alongside the Alaska volunteers, who help out with medical projects as well as construction of buildings and bore-hole water wells.
Jill has become one of the world’s experts on the treatment of Kala Azar, also called visceral leishmaniasis, a usually fatal parasitic disease caused by an organism transmitted by the bite of the sandfly. Kala Azar causes an intermittent high fever, an enlarged spleen, weight loss, swollen liver and then death, often due to other diseases such as pneumonia or tuberculosis.
Two years ago the hospital was treating close to 300 new cases a week, delivering shots to 1,000 people a day of primarily the injectible sodium stibogluconate, an antimonial, with another antibiotic called paromomycin. The standard course of treatment lasts about a month and makes the patient feel sick, but usually cures the infection which mostly does not recur. Severe cases and ones coexisting with tuberculosis or HIV are treated with every other day liposomal amphotericin B for 6 doses, which is significantly more expensive and also much easier to tolerate. During the time I was in Old Fangak, there were few new cases of Kala Azar, only about 1 a week. Apparently sandfly numbers and bugs in general are lower this year, but nobody is sure why or if this is a trend that can be expected to continue.
The other diseases that were common were tuberculosis, malaria and brucellosis, with a few cases of HIV as well as infectious complications of starvation, snake bites, spear wounds, tropical ulcers, pregnancy complications and cancers. The hospital complex has several buildings including brick and cement structures that have become more dirty and broken down over the years, a new building that is made out of various prefab building materials and is easier, so far, to keep clean and several mud huts. There is a laboratory, a pharmacy and a dispensary, a construction compound a short distance away and a compound where tuberculosis patients stay for the 8 months they are in directly observed therapy.
Since this clinic is a primary health care delivery site, it has a formulary of drugs that is considered to be basic for treating common illnesses. Depending on what diseases are trending upward, drugs sometimes run out, and patients can’t get the optimal treatment for their disease. Chronic diseases such as lung disease, diabetes and congenital heart disease were difficult to treat, since they required ongoing medications or surgery, which is not available anywhere close. We saw cancers too, and these cases were agonizing because there was nothing we could give to treat the disease, and strong pain medication was nonexistent. While I was there we saw a 23-year-old woman with advanced ovarian cancer and a belly full of ascites. She had been to a regional hospital where surgery was felt to be impossible and had returned to us, so full of fluid she could barely breathe. She felt better after a few gallons of liquid were drained, and was able to walk around the village a bit, but her disease would eventually progress to the point that nothing could be done and she would die, with very little in the way of pharmacological comfort.
There were also two very old people, one with a swollen leg from a blood clot, with multiple masses in her liver on ultrasound suggestive of advanced cancer. Anticoagulation with heparin was not possible since heparin is not considered an essential drug and is not in the formulary. Treating the clot when nothing could be done about the cancer would probably have been silly in any case and she passed away on her way home from the hospital. An old man who knew he was dying, but not why, had a huge tumor mass in his abdomen and chest and was able to return home by boat to die in a familiar place. A little boy who had trouble swallowing had what appeared to be a nasopharyngeal cancer. It may be possible to raise money for him to be transported to a center where radiation can be done, but that is very expensive and it is far from certain that it will happen.
Tuberculosis in rural South Sudan often presents with disease outside the lungs, and when it is in the spine can cause painful deformities which are often associated with paralysis of the legs. Therapy for tuberculosis can prevent death from overwhelming infection but often the spinal deformities are well established before patients even get to a doctor and they end up unable to walk. Donors sometimes arrange for wheelchairs which are wooden scooters with hand pedals, well designed for the terrain and the patients’ needs.
There is plenty of pulmonary TB as well, and patients often expose others by coughing before their disease is confirmed and they can move to quarters with other TB patients. Respiratory isolation is just not practical in this setting. I saw several patients with severe spinal deformities, some of whom were dealing with the complications of paralysis—infected ulcers on weight bearing areas and restrictive lung disease which was complicated by pregnancy. I saw a couple of cases of likely tuberculous pericarditis which bedside ultrasound confirmed to be causing heart failure. In the U.S., pericardial tamponade (impairment of filling of the heart due to fluid in the bag that holds the heart) usually presents as a life threatening emergency. In the cases I saw, the fluid had been present in a diseased pericardial sac for quite a long while and the patient only presented when their tolerable chronic shortness of breath became intolerable due to some other event. Usually fluid in the pleural (lung) space or pericardial sac will decrease in volume when patients are treated with steroids in addition to their TB drugs, though one of these patients did die within a few days of arrival since she was also stressed by the recent delivery of a child and a 4 day trip in the hot sun to get to the hospital as well as other chronic medical problems. In the U.S. both of these patients would have been in the intensive care unit with cardiologists in attendance, but in Old Fangak there was very little we could do acutely besides provide a comfortable place to sleep and a few cardiac medications that may or may not have been effective.
Brucellosis, which is carried by cows, was very common. It presents with fever and joint pains early in its course, but can have a myriad of presentations as it becomes more chronic, including stiffness and pain in the lower back. When it causes severe arthritis it is rarely completely reversible and the treatment for it is in no way benign. In rural South Sudan cows are currency and they are more often held as wealth rather than used for meat or milk. Piles of cow dung are everywhere and cow dung is mixed with clay to make houses.
The hospital is staffed by Jill Seaman, an American doctor, any volunteers (and there aren’t many) from overseas as well as local health workers with varying degrees of experience and skill. The health workers use protocols for testing and for treating common symptoms and diseases and do an admirable job of treating those diseases that are most common, including malaria, tuberculosis and Kala Azar which would require the attendance of multiple specialists in an American hospital and much head scratching to be appropriately managed. Diseases that don’t fall into common categories may not be treated well, either because they are difficult to diagnose or because treatment is not available.
We saw 3 cases of newly presenting symptomatic congenital heart disease, one atrial septal defect and two ventricular septal defects, which may be eligible for free surgery if the patient can get to Khartoum where there is a heart surgery institute. There were also a reasonable number of worried well patients who had symptoms that bothered them a great deal, usually pain of some kind, but no red flag signs to suggest any more than muscle strains from chronic hard work.
Being a woman was not such a great deal
There is very little industry in rural South Sudan and, beyond building houses, gathering wood, cleaning fish and working on farms. A woman’s value lies in her ability to have babies. South Sudan has the highest maternal death rate, with 2 women dying for every 100 babies born. Most of these women die at home, but some of them come to the hospital at Old Fangak with their birthing difficulties.
When I arrived at the hospital the very first day, a woman was waiting in the minor surgery room on the floor in a pool of blood. She had come to the hospital with bleeding in her 24th week of pregnancy, stayed as an inpatient at bedrest with a threatened miscarriage, then returned home (walked, of course) to deliver her preterm infant who died, then came back to the hospital with a post-partum hemorrhage because of a retained placenta. She was anesthetized and Dr. Jill manually extracted the placenta and the patient, though rather anemic, survived and thrived and returned home. The family buried the baby with the placenta. She was a young mother but this wasn’t her first child. I saw several miscarriages and threatened miscarriages while I was there and one complication in which the mother lost her life.
Unlike some developing countries where girls are devalued and even selectively aborted or killed at birth, in South Sudan a man wishing to marry must pay the family of the girl he chooses with cows, the most trusted local currency. Raising a girl baby to maturity is thus a money maker for a family. Men may keep several wives and women do not appear to have any rights. Domestic violence and fighting of all types was strictly forbidden on the hospital grounds, but not at all uncommon in the community. It would be better, I think, to be born a cow than to be born a woman in Old Fangak. Still, the women I met were often intelligent, assertive and sometimes clearly treasured by their husbands and families.
Tribes and cultures
There are many tribes with their own distinct languages and cultures in South Sudan, but the main 3 are the Nuer, the Dinka and the Shilluk, all of whom I met in the hospital. Those who have had education may speak Arabic or English, but if they do not, they cannot communicate with each other and exist in Old Fangak in what appears to be a fragile peace. Nuer people were in the majority and I picked up a smidgen of Nuer language. The usual greeting, “male”, means peace, which is a nice thought. Nuer boys have a distinctive scarification on their foreheads which is part of a coming of age ceremony in which the forehead is inscribed with parallel lines with a sharp object by an elder of the tribe. If the boy squirms or cries, the lines are not straight and he is marked as a coward. I didn’t see any complications of the procedure while I was there, though I imagine there must be some. Girls also have decorative scars on their face and chests, more often patterns of dots. Occasionally the scars grow thick on the chest and women would complain of pain and itching when this happened. They often pull their own teeth and train the remaining teeth to splay in the front, which is considered to be beautiful.
Critters and the natural world
I arrived at the end of the wet season and if I had stayed longer the weather would have gotten cooler, possibly down into the 60 degree range during the night. As it was, it was mostly in the mid-90s during the day, with very high humidity, and I was sticky sweaty all the time. In the evening before I retired to my tent under the big tamarind tree I would take a bucket bath, which was delightful, but which would wash off the mosquito repellent, making lounging with friends around the campfire less attractive.
Nights were long, as much as 10 hours in my tent reading and writing and thinking, which was a delightful luxury that I don’t allow myself very often at home. Night sounds were frogs on the shore of the river, squeaks of bats, sometimes an owl and packs dogs working out their issues in the distance. I mostly slept through the sounds of cats eating overconfident rats. Early morning roosters would crow starting about 4 a.m. and then doves would begin to coo in the trees and kites and ibis would call. Honey bees would buzz in the trees. They are said to be aggressive but I never had problems with them.
There were monitor lizards in the yard and a python in the latrine, cobras in the pantry trying to help with the rat problems and various poisonous snakes that were unlikely to take me unawares since I wore good solid shoes and carried a headlamp. The insect life was fascinating, with huge beetles and praying mantis and evil biting carnivorous ants who attacked our thanksgiving feast leftovers while we slept. Mosquitoes were plentiful, though not as plentiful as they are sometimes, I’m told. Some of them carry malaria. There are big flat spiders and spiders with long legs but none that seemed particularly threatening. There was a crocodile, but I never saw him. The diversity of birds was amazing and I can imagine bird watching tours might make the area some money eventually. The water of the river is not bad, though it carries schistosomiasis, which, if untreated, can cause various major organs to malfunction. There is a treatment for it, though, a single pill of praziquantel, so I went swimming and enjoyed it very much. Both men and women bathe in the river often and are good swimmers. It looks like they are having fun.
Food, or lack thereof
Starvation continues to be a major health issue in the area I visited. As the civil war has ended people are starting to farm and garden which increases the variety and abundance of food. People can grow their own corn and sorghum which are major staples. Cows milk supplements their nutrition. They grow a small amount of tobacco which people smoke in pipes in the evenings.
The people stuck in the hospital cook their own food, but many of them depend on bags of sorghum and oil from the world food program, as well as bags of “plumpy nut,” which is provided to some categories of malnourished people. Plumpy nut is expensive and is provided by aid organizations for patients with severe malnutrition. It is just peanut butter with sugar and milk powder and vitamins added, but the little serving size bags make it easy to eat and it resists spoilage.
Women and girls make sorghum cereal by grinding the sorghum on boards or stones with a rounded piece of wood, then cooking it over tiny cook fires. This is usually breakfast, lunch and dinner for people at the hospital. Very occasionally meat supplements their diet. Nobody was fat.
I’m back now, safe and healthy, and I didn’t even lose much weight. Stories of Sudan and South Sudan in the news made me and my family and friends worry that there would be gunboats and AK-47s and raids with burnt villages and child soldiers and machete attacks. Although this is not impossible in a country where violence has been common and widespread for decades, there has been peace in Old Fangak for 2 years and there was never any hint of danger to me personally from anyone armed or angry.
The generation that is now in its teens and twenties has grown up without much of the values that keep communities strong, but still there are communities and people who value them and wise people who act as role models. There are still cattle raids, which lead to conflict with physical violence of various kinds. There are many less guns in circulation, and the area where I stayed is disarmed of its guns, though they are still available at the police station should war break out again. Mostly people injure each other with fists and spears, and there is less danger of bystanders getting unintentionally harmed. The most vulnerable I felt during the whole trip was when I was at the airport in Juba flying in and out of the country. It is crowded and inefficient and contrary and seems designed to make transit as difficult as possible. Still, thousands of people every day make it into and out of the country and in fact I had no trouble.
Jet lag is fading, but every morning I wake up finding myself trying to diagnose mysterious tropical disease syndromes and cure the incurable. I am thankful for cold weather and a warm house and a well fed dog who does not expect me to throw a rock at her. I learned a huge amount in a short period of time and met wonderful wise people, both African and American. It was difficult, time consuming and expensive to get to South Sudan and, despite all that I will probably go back.
Janice Boughton, MD, ACP Member, practiced in the Seattle area for four years and in rural Idaho for 17 years before deciding to take a few years off to see more places, learn more about medicine and increase her knowledge base and perspective by practicing hospital and primary care medicine as a locum tenens physician. She lives in Idaho when not traveling. Disturbed by various aspects of the practice of medicine that make no sense and concerned about the cost of providing health care to every American, she blogs at Why is American Health Care So Expensive?, where this post originally appeared.