Ric Francis Photography: Documentary photography in East Central Africa and Norway

Mysterious & Devastating

Lubiri Village (Pader District), Uganda - Nodding Syndrome (NS) is a mysterious and devastating neurologic condition which stunts growth, causes its victims to nod (repeatedly dropping their heads forward), have epileptic seizures, and causes cognitive deterioration. In severe cases it can result in death. 

The condition mostly affects children 5-15 years in northern Uganda, South Sudan and Tanzania - although apparently there are no active cases in Tanzania. According to Komakech Paul, a senior clinical officer at the Atanga Health Centre III in Lubiri Village, Uganda, NS is concentrated in Pader, Kitgum, Lamwo, Lira and Gulu districts in northern Uganda. It has been active in the region since 1997 and the first really bad cases began to appear in 2006, said Mr. Komakech. “It’s associated with river blindness which is linked to blackflies. Blackflies breed in fast flowing fresh water. Sub-counties in the aforementioned districts, which are along the Aswa, Pager and Agago Rivers, are where the families affected by NS live. The link to river blindness is an assumption that’s still being investigated,” stated Mr. Komakech. 

  • September 11, 2014 - Lapul - Ocwida village - Aromrach Scovia, 13, left, and Akello Lillian, 11, far right, both Nodding Syndrome (NS) patients, wait to enter the Lapul - Ocwida Health Centre II along with other victims and caretaker family members. The village is being serviced by a medical team from the Atanga Health Centre III.
  • September 15, 2014 - Lubiri Village - Nodding Syndrome (NS)) victim Lakony Walter, 17, started getting sick with the illness when he was three years old; he lost the ability to speak at seven and has not been able to walk for four years - he stays in his living quarters 24-hours a day, seven days a week. Lakony has not taken any medication in four months because his family lost his record book (a history of his case) in a house fire; his mother has been told by a health official to get him back on medication. He's one of four children and the only one with the illness. NS causes him to have epileptic seizures, which when he falls causes him to bang his body repeatedly on the ground; the wounds on his elbow are the result of such banging.
  • September 13, 2014 - Lapul - Ocwida village - Okot David, 18, standing  outside his hut. Okot represents a severe case of Nodding Syndrome; he has been ill with it since 2003. He's tied to his living quarters 24-hours a day, seven days a week. At an advanced stage the syndrome causes its victims to wander aimlessly, hence families will tie the person with a rope or chain to prevent them from getting lost, injured or in the case of a young woman raped.
  • September 13, 2014 - Lapul - Ocwida village - Okot David, 18, is washed by his mother (Apoto Ellen, 45). Okot represents a severe case of Nodding Syndrome; he has been ill with it since 2003. He's tied to his living quarters 24-hours a day, seven days a week. At an advanced stage the syndrome causes its victims to wander aimlessly, hence families will tie the person with a rope or chain to prevent them from getting lost, injured or in the case of a young woman raped.
  • September 13, 2014 - Lapul - Ocwida village - Nodding Syndrome patient Okot David, 18, represents a severe case; he has been ill with the syndrome since 2003. He's tied to his living quarters 24-hours a day, seven days a week. At an advanced stage the syndrome causes its victims to wander aimlessly, hence families will tie the person with a rope or chain to prevent them from getting lost, injured or in the case of a young woman raped.
  • September 13, 2014 - Lapul - Ocwida village - Nodding Syndrome patient Okot David, 18, sits outside his hut as a younger brother and sister wait for another sibling, so that they can walk to their school district some three hours away. The school season is about to begin so they will stay at the family's other home which is closer to the school. Their brother represents a severe case of Nodding Syndrome; he has been ill with it since 2003. Okot is one of seven children and the only one with the illness. He's tied to his living quarters 24-hours a day, seven days a week. At an advanced stage the syndrome causes its victims to wander aimlessly, hence families will tie the person with a rope or chain to prevent them from getting lost, injured or in the case of a young woman raped.
  • September 15, 2014 - Lubiri Village - Two school children walk pass a sign for the Atanga Health Centre III, which treats Nodding Syndrome victims.
  • September 11, 2014 - Lapul - Ocwida village - Parents and caretakers with Nodding Syndrome patients wait to enter the Lapul - Ocwida Health Centre II.
  • September 11, 2014 - Lapul - Ocwida village - Nodding Syndrome patient Kitanya John, 16, waits outside for his name to be called at the Lapul - Ocwida Health Centre II.
  • October 3, 2014 - Lubiri Village - Caretakers of Nodding Syndrome patients wait to enter the Atanga Health Centre III. On the desk is a poster which highlights the symptoms of the illness and a patient registry book.
  • September 11, 2014 - Lapul - Ocwida village - Nodding Syndrome patient Oyoo Maurice, 21, displaying wounds from a recent epileptic seizure (a common symptom of Nodding Syndrome), waits with his caretaker, sister-in-law Atenyo Ester, 30, seated behind, as a medical records assistant reviews his record.
  • September 11, 2014 - Lapul - Ocwida viillage - Komakech Paul, center, senior clinical officer, reviews the case of Nodding Syndrome patient Kitanya John, 16, left, and prescribing drugs at the Lapul - Ocwida Health Centre II. Komakech is part of an outreach team visiting from the Atanga Health Centre III.
  • October 3, 2014 - Lubiri Village - Dr. Ben Watmon, an ophthalmologist, tries to examine the eyes of Nodding Syndrome (NS) patient Lamwaka Monica, 15; unable to understand what the doctor was trying to do she refused to cooperate, even with her mother, Lalam Rose, nearby. Dr. Watmon is with Gulu Hospital and is at the health centre on an outreach visit to assist NS patients. NS is a mysterious and devastating neurologic condition which stunts growth, causes its victims to nod (repeatedly dropping their heads forward), have epileptic seizures, and causes cognitive deterioration. In severe cases it can result in death.
  • October 3, 2014 - Lubiri Village - Michael Opiro, 14, rests at the Atanga Health Centre III, with his mother Angee Alicantorina, 50, at his side. Michael has been ill with Nodding Syndrome (NS) since 2006. He was hospitalized at the health centre because he was suffering from malnutrition and seizures; he was getting poor care at home and not receiving his drugs. He will remain in this hospital ward until his general health improves. Ms. Alicantorina has nine children - only Michael has NS. NS is a mysterious and devastating neurologic condition which stunts growth, causes its victims to nod (repeatedly dropping their heads forward), have epileptic seizures, and causes cognitive deterioration. In severe cases it can result in death.
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