One of the many diseases confronting the people in Rejaf Diocese is onchocerciasis. Many times onchocerciasis is called or OV, riverblindness, or Oncho (pronounced Oncko) for short. This disease was foreign to me when I first came to South Sudan, which is not hard to imagine considering I do not have formal clinical medical training. Unlike malaria, which receives considerable attention and continues to be the dominant disease killing people throughout South Sudan and much of Africa, oncho is categorized as a neglected tropical disease (NTD). The disease is transmitted from the “black fly”, which injects small worms called microfilaria into its victim. The microfilaria then grow into full size falaria and reproduce microfilaria throughout the body.
The most immediate symptom of OV is severe itching throughout the body. Most of the OV victims I’ve encountered are farmers, and the black flies bite them on the lower portion of their legs as they till the ground. The result is that their legs are the dominant site where the intense itching begins. To reduce the itching sensation, they scratch their legs to the point of permanent scaring. The people tell me the scratching has two purposes: to give temporary relief from the itching, and to dig out the worms residing just under the surface of the skin. The male OV victims I’ve met, who typically perform the lions share of the farming duties for the family, almost uniformally have scratched their chins to the point that they develop pigment discoloration along their chins (commonly called “lepeord skin”).
For the women, who typically don’t till the ground as often as the men, OV has the tendency to develop nodules – raised lumps where the adult filaris congregate – on the arms. The books and websites I’ve read to learn about this disease suggest that the worms also congregate in various places throughout the body causing body pain, back pain, and a number of other side effects.
Perhaps the worst side effect to onchocerciasis is its effect on the eyes. Oncho, if untreated, often causes blindness, which is the reason for one of the diseases common nicknames – riverblindness. When I travel to villages, the people show me a number of those who have gone completely blind from the disease. Others, that is almost everyone, complain of eyesight loss, which they attribute to the disease.
The positive side of this disease, if there is one, is that a treatment exists for it. For those who have gone completely blind, there is no remedy. For others, if they are given the drug ivermectin the microfilaria will die (which causes the bulk of the side effects), and the adult worm will be unable to reproduce. Merck has donated ivermectin since 1987, and promises to donate the drug for as long as the drug is needed. If done properly, mass distribution of the drug should be administered annually throughout areas where OV is present.
Unfortunately, the people of Rejaf have not received the drug since they began trickling back into their villages in 2008. Some of them received the medicine when they were exiled in Uganda, or in an IDP (internally displaced persons – meaning displaced within your own country) camp in Juba. Yet, the medicine has been brought into country consistently for several years. I’ve been working with the World Health Organization (WHO), the organization responsible for acquiring the drugs, transporting them into the country, the national ministry of health, the state ministry of health, and the Juba county health office. To date, the medicines have still not been distributed. I’m tempted to just get the drugs and distribute them myself, but that will have a harmful longterm effect. Instead, my goal has been to work with WHO, the government, and the local villages to ensure the medicine is distributed in a way that can be repeated in the upcoming years. WHO and the government have continually listening to my complaints but there is no management plan or accountability measure to ensure the work is completed properly. They have challenged me to come up with such a plan, and I now working on it.
Please pray for the people suffering with OV, for those responsible for distributing the medicines, and for the churches influence on the situation.