A Mysterious Fate: Nodding Syndrome in Northern Uganda by Esther Mbabazi

A child walks at the now desert...oro and neighbouring districts.

A child walks at the now deserted rehabilitation center, Hope for Humans that used to house and take care of some of the sick children suffering from nodding syndrome in Omoro and neighbouring districts.

Thousands of children are affected by nodding syndrome
in the remote northern Uganda. Researchers have linked the disease to the onchocerciasis virus that is prevalent along the River Aswa in different districts of Northern Uganda. No one’s sure how they got infected, or how to cure them. First discovered in Tanzania in the 1960s, the disease causes stunted growth, body deformities – even blindness and death. These children suffer in the shadows, their plight ignored at large. The one center that has provided most of the support for the incurable condition recently shut down due to lack of funds. This story brings to light this baffling condition and the children affected by this - amidst mounting challenges.

Lakica Barbara, 11 has been suf...rome since she was 4 years old.

Lakica Barbara, 11 has been suffering from nodding syndrome since she was 4 years old.

Aker Ivan, 10, was diagnosed wh...y his father or elder siblings.

Aker Ivan, 10, was diagnosed when he was 8 months old. The doctors first thought he was suffering from severe malaria until they finally ruled out symptoms of Nodding Syndrome. Because of his condition, Ivan has never been to school and lives at home always watched over by his father or elder siblings.

A Mysterious Fate: Nodding Syndrome in Northern Uganda

Aciro Grace, 18, at her home in...has significantly deteriorated.

Aciro Grace, 18, at her home in Omoro District. She got diagnosed with the symptoms of Nodding Syndrome in 2005 while living in the camp for Internally displaced people from Kony’s Lord’s Resistance Army. When the Hope for Humans, a rehabilitation centre for children with Nodding Syndrome opened, Grace was among the first children admitted to in-ward care as her condition was terrible. She has since improved but again since the centre closed, the children’s health has significantly deteriorated.

Ochora Walter, 16, got diagnose...s also affected by the disease.

Ochora Walter, 16, got diagnosed in 2009 and was started on treatment right away. He lives at home with his family and sister who is also affected by the disease.

A portrait of Opio Jasper, 16, ...vironment his parents realised.

A portrait of Opio Jasper, 16, at his home in Pader District, Northern Uganda. Jasper got diagnosed in 2004. His situation worsened in 2017 and he stopped going to school as he was getting triggered by noise, he needed a calm environment his parents realised.

Larubi Gladys, 16, has been suf...ecame too intense and frequent.

Larubi Gladys, 16, has been suffering from nodding syndrome since 2012. She stopped going to school when the seizures became too intense and frequent.

Opio Balaam, 20, was diagnosed ...lot of deformities to his body.

Opio Balaam, 20, was diagnosed in 2006 and was among the first to be taken in-patient at the Nodding Syndrome rehabilitation center by an NGO, Hope for Humans. The disease has caused a lot of deformities to his body.

Anyeko Vicky, 16, has been suff...e dose of the anti-convulsants.

Anyeko Vicky, 16, has been suffering the disease for 11 years now. Her situation is very delicate as she gets very violent seizures If she misses a single dose of the anti-convulsants.

Aciro Grace, 18, at her home in Omoro District. She got diagnosed with the symptoms of Nodding Syndrome in 2005 while living in the camp for Internally displaced people from Kony’s Lord’s Resistance Army. When the Hope for Humans, a rehabilitation centre for children with Nodding Syndrome opened, Grace was among the first children admitted to in-ward care as her condition was terrible. She has since improved but again since the centre closed, the children’s health has significantly deteriorated.

Ochora Walter, 16, got diagnosed in 2009 and was started on treatment right away. He lives at home with his family and sister who is also affected by the disease.

Ochora Walter, 16, and Aciro Gr...od active lives to the disease.

Ochora Walter, 16, and Aciro Grace,18 at home in Omoro District. The disease makes the affected children mostly inactive and they lose their childhood and young adulthood active lives to the disease.

Aciro Grace chats with her moth...some children with the disease.

Aciro Grace chats with her mother at her home in Omoro District, Northern Uganda. She contracted the disease in 2005. Because of the terrible health condition she was in, Grace was the first resident patient for the NGO Hope For Humans which ran a rehabilitation center for children with Nodding Syndrome. The center closed down in December 2017 because of lack of funding. Grace’s improved health is at a risk with no support from the only organisation that was on ground helping some children with the disease.

Ochora Walter plays at home wit...lay with the affected children.

Ochora Walter plays at home with his younger sibling. The neighbours still have stigma around the disease and some don’t even allow their children to play with the affected children.

Acaa Lucy at the government hea...on which they take twice a day.

Acaa Lucy at the government health centre where she gets monthly portions of medicine for her two children. Each month, the children are given a dosage of anti seizure medication which they take twice a day.

The affected children are given...their children just once a day.

The affected children are given a dosage of two anti convulsants that they take twice a day. The disease causes deformation of the body, affects growth of the brain, and causes violent seizures. The medication requires a good diet which almost all families can’t afford with many families only able to feed their children just once a day.

Ochora Walter, 16, and Aciro Gr...adulthood lives to the disease.

Ochora Walter, 16, and Aciro Grace,18 at home with one of their brothers in Omoro District. The disease makes the affected children mostly inactive and they lose their childhood and young adulthood lives to the disease.

Apio Brenda, 15 photographed at...llenges to go through each day.

Apio Brenda, 15 photographed at home in Awere, Pader District in Northern Uganda. Brenda contracted the disease in 2006 while living in Awere IDP during the LRA war. Brenda lost her sight to the disease in 2013 due to the violent seizures she experiences. Her body deformed and health is deteriorating every day. With the cause and treatment of this disease not yet found, children and families affected by Nodding Syndrome are left with little hope and many challenges to go through each day.

42 year-old Arach Margaret watc...families and children affected.

42 year-old Arach Margaret watches her children in thought at her home in Pader District, Northern Uganda. In 2016, Margaret lost her husband and remained the sole caretaker of her family of seven children - two of whom suffer from Nodding Sydrome. The causes and treatment of this terrible disease are not yet determined. Hope is little for the families and children affected.

Lakot Milly, 19, was diagnosed ...e been suffering severe wounds.

Lakot Milly, 19, was diagnosed with Nodding Syndrome in 2008 in Awere IDP camp. In 2016, she fell in fire while having seizures and she has since been suffering severe wounds.

Hope for Humans, the only NGO t...t without any therapeutic help.

Hope for Humans, the only NGO that rehabilitated affected children closed in 2017 as ran out of funds. The children have since been left without any therapeutic help.

Esther Ruth Mbabazi

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