They walked dozens of miles through rocks, brush, thistles, rivers and swamps. For some, their only defenses were worn-out shoes, ragged flip-flops or just strips of animal hide. Some wore no shoes at all.
Their legs were leaden and muscles fatigued. Their feet were blistered, sore and perhaps even bloodied by the time they reached their destination: Mabaan County, Upper Nile State, part of the newly formed country of South Sudan.
Now, imagine walking those miles – and feeling nothing. Until you look at your foot and realize a wound you couldn’t feel – because of nerve damage – has become severely infected.
Such is the story of a modern-day South Sudan refugee and leprosy patient.
In a country that is home to some of the world’s most neglected diseases, leprosy is still spreading. This is one of the ways SIM serves in South Sudan: by helping those afflicted with leprosy get the medication and treatment they need. It is the only leprosy treatment program in Mabaan County.
Since late 2011, Mabaan County’s population has swelled by more than 100,000. The arrival of the Blue Nile refugees doubled the number of patients in the program.
The increased numbers serve to underscore the need for Vicki Beattie, an SIM medical professional from the U.S. She came to South Sudan from Zambia, where she had worked in community outreach with leprosy and tuberculosis patients.
“God has put it on my heart to help marginalized people and that is certainly where people affected with leprosy fit,” she said.
One morning, in a small concrete building just out of earshot of the bustling Doro refugee camp market, Neil Ingall, an SIM nurse from Scotland, and assistant Cornelius, an Uduk who lives in the camp and is fluent in English, prepare for an outpatient clinic day.
The first patient is a 13-year-old Uduk boy named Jeremiah. He has missed appointments because of school. As Ingall leads him through motion and sensory exercises on his hands and feet, he urges the teen to be consistent with follow-up.
The patients continue, one by one. Twenty-somethings. Forty-somethings. Men. Women. Some from nearby and some from hours away. Each in varied stages of healing from the damage done to their skin and nerves.
With a year-long, multi-drug therapy regimen that has been a treatment worldwide since the 1980s, many show visible signs of improvement within weeks.
Leprosy has been present for centuries. The Bible book of Leviticus records diagnosing and quarantine measures, with the Levite priests assigned to diagnose symptoms.
The disease was “recognized” in ancient civilizations of China, Egypt and India, according to the World Health Organization. While it is still present in many countries, its occurrence has fallen to fewer than one in 10,000 people worldwide. WHO official records show about 182,000 people, mostly in Asia and Africa, who were affected at the beginning of 2012.
Research has not pinpointed exactly how it is transmitted. It is caused by a bacterium that appears to spread through respiratory drops, according to the Centers for Disease Control. It affects the skin, which results in discolored lesions, and the nerves, which can lead to loss of feeling. Eyes can also be affected.
A community for the forgotten
There is still a stigma attached to leprosy – the belief that anyone who has it could pass it to others. Often, people are shunned or turned away from communities because they are considered “unclean.” “Leper colonies,” which have been around for thousands of years, still exist throughout the world, including South Sudan.
The truth, however, is that within days of beginning treatment, a person is no longer contagious.
Patients still battle insecurities. When asked if he told anyone at school where he went for his treatments, Jeremiah said no. He wasn’t sharing his diagnosis with his friends.
Enter self-care groups. Beattie, Ingall and Cornelius started several in the refugee camp in 2012. Beattie hopes the model they developed can help patients care for themselves and give them a support system as well.
Remember the initial scenario? That is often repeated – an infected wound on the foot or a hand that lingers too long on a hot surface – because patients cannot feel their extremities or have problems with their eyes.
Nerve damage can be permanent, even after treatment. As part of a self-care group, patients with disabilities who are even off treatment can meet regularly.
“They check each other’s eyes, hands and feet for problems. If there is a problem they ask why, like, ‘Why did you walk far without your shoes?’ Beattie said. “It’s easier for them to accept a scolding from a fellow sufferer than a health care person. They can help each other solve problems related to their disabilities.”
The plan is to increase the number of groups, so that all areas of the camp are represented.
Zenab, a 28-year-old Jum Jum woman, fled Wadega in Blue Nile State in late 2011 to escape the bombing. After reaching her destination near Josef Batiel camp, miles from Doro, she began to suspect she had leprosy and sought the medical advice of a camp clinic.
Her suspicion was confirmed. The medical staff didn’t have the capability to treat her, but they knew of a program that did: SIM.
When she first arrived at the SIM clinic, she was despondent, the swelling in her face quite prominent.
Fast-forward a few weeks. The multi-drug therapy had already begun to take affect. The swelling had reduced dramatically – and a smile creased her face as she chatted animatedly.
Zenab was on the road to recovery, another person helped by the SIM leprosy outreach.
The work is not done though. Leprosy is an equal opportunity disease. Men, women and children can all be infected. As Beattie has developed the program in South Sudan, she found something she hadn’t expected.
“I was surprised to see so many children,” she said. “Children with leprosy tell you that leprosy is still being transmitted.”
That means continued expansion to reach as many people within Mabaan County as possible. Self-care groups are a key part of that vision.
“I hope the self-care groups develop well, so people can solve their own problems,” Beattie said. “One day, I’d like to see them do an income generation project so they can learn how to help themselves.”