Disease: Onchocerciasis

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”).

Leopard skin on man with Ochocerciasis

"Leopard skin" on man with Ochocerciasis

Boy's leg begin to show the first signs of Ochocerciasis. The scabs are the result of his scratching.

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.

A group of adults completely blind from oncherciasis

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.

Onchocerciasis medicine sitting in storage at hospital since July 2011. The hospital sits in an area where most of people in the immediate surroundings are affected, but still the medicines haven't been distributed.

Please pray for the people suffering with OV, for those responsible for distributing the medicines, and for the churches influence on the situation.

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9 Responses to Disease: Onchocerciasis

  1. Gann Herman says:

    Darriel, thank you for writing this story–when i heard you tell it at GLI, i was astonished at how little accountability medical and governmental people hold themselves to. Good for you for exposing this need and working in a positive way to create a sustainable delivery track for the medicines. Blessings as you press on!

    • Patrice says:

      Darriel,

      Why not use a method that has already proven to work? This is not the first time that drugs have been distributed.

      • Patrice says:

        Do the women get a big bump because they do not scratch themselves as much? They probably do not inche as much because they are not getting bite as often. The scratching digs the worms out, but since the women do not scratch as much the worms stay in the women.

        • I’m not sure why males and females get them in different places. I’ve seen plenty of women with the scars on the legs as well. The people only scratch the little worms (microfilaria) because those are the ones that itch. What you see on the woman’s are is a congregation of the full grown falaria. The reality is that they’ll have pockets of full grown faliria throughout their bodies. The arm is just what’s visible for me.

      • That’s the problem precisely. They don’t have a method that’s proven to work. It’s a new country that has never before done a country-wide distribution, at least not successfully. Other countries have done it but different countries give different levels of resources, which make a big difference. I’m building my plan from what I’ve learned from the Center for Disease Control (CDC) website, and common sense from my observations and business sense.

  2. Wow. This is heartbreaking, especially knowing that the drugs are available and literally sitting untouched in boxes. It’s amazing how our systems and “order” sometimes gets in the way. I pray that a system can be put in place soon. God bless the work you’re doing there! Proud of you 🙂

  3. Josephine Rutledge says:

    It is hard to believe. I will pray for the people.

  4. Sanetta says:

    This must be such a frustrating experience for the community and for you. I will be praying for God’s grace, comfort, peace, and wisdom.

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