Wednesday, January 16, 2013

Nodding Disease



In certain towns along the Uganda/South Sudan border, there are young people who spend their lives kept out of the public eye.  They have been stricken with a mysterious disease that doctors around the world are still working to understand.  Around the age of five the symptoms will begin—the seizures, the drooling, the loss of memory.  If these children live to reach adulthood, they will have degenerated into incoherent individuals who cannot recognize the most familiar faces before them.  The most blatant characteristics of “nodding disease” are a protruding lower lip, sunken eyes, and frequent nodding over meals in the evening. 

One of the most curious aspects of nodding disease is that it remains localized to the S. Sudan/ Uganda border; that includes the region of western equatoria—Mundri town. Since healthcare in this part of the world is so basic, there has been little study of the disease until recent years.  The people of Mundri have become used to seeing foreign organizations and aid groups drive their dusty land rovers into town for short-term visits, eager to find out more about this deadly affliction. Unfortunately, not much has been concluded—or even suggested to the Sudanese people here, leaving them to make their own assumptions about the disease.  One popular belief is that nodding is brought on by bad spirits and nothing can be done to help these people.  Even leaders in the church here hold to that belief.  I so want to see some progression in the way people here view sickness prevention and treatment.  However, I don’t think much is going to change until more is known for certain and more resources are given to the populace. 

This past week, a medical team all the way from Hadassah Hospital in Jerusalem have been in Mundri, examining individuals who show the classic symptoms of the disease.  They have been taking blood and analyzing the genomes in hopes of proving the hypothesis that the disease is genetic.  I’m praying that they will gain insight through their research this week.  That way, information on the prevention and treatment of nodding disease can make its way into the clinics of Mundri town and other villages throughout South Sudan and Uganda.  I’m hopeful for a breakthrough in the study of this disease, especially since the people here in S. Sudan already have so much working against their health on a daily basis.

Links to information on Nodding Disease



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