Nodding disease or nodding syndrome is a recent, little-known disease which emerged in Sudan in the 1960s. It is a mentally and physically disabling disease that only affects children, typically between the ages of 5 and 15. It is currently restricted to small regions in South Sudan, Tanzania, and northern Uganda.
Government earlier this month allocated Shs1.4b to revitalise the nodding syndrome response in Northern Uganda. More than 3,000 patients will be provided with medicines (anticonvulsants) from treatment centres in addition to provision of food (posho and beans) for four months and non-food items including blankets, bedsheets and mattresses), according to a team led by Prime Minister Dr Ruhakana Rugunda at the OPM early this month.
As victims and families alike, wait to see how far this outreach will go in tackling the devastating disease, PML Daily’s Irene Abalo Otto, in a two-part series looks at the mark that nodding syndrome will leave on people in northern Uganda.
Joyce Alanyo, 24, was born to 47-year-old Filda Anyeko and 52-year-old Leo Onaba. She was beautiful and healthy. Two years later, God blessed the family with another child, Emmy Oloya, now aged 22. Anyeko and Onaba have six children in total.
The family that lives in Lagwal Village, Okidi Parish Labongoamida Sub-county in Kitgum District raised their children well until what they call a “strange disease” befell their two children Alanyo and Anyeko.
“It was at around 2am on a morning in June, 2000 when we heard one of our children acting in a weird way, like an evil spirit had possessed her. I got up, scared. Alanyo convulsed and lay still for about 15 minutes, occasionally gasping for breath,” narrates Alanyo.
Alanyo’s was among the first cases of nodding syndrome reported at Kitgum General Hospital in 2000. The doctors treated it at that time as malaria.
“The doctors thought it was malaria. They put her on drip. After two days, she did not show improvement, she would convulse even while we were at the hospital. Later the doctors discharged her and gave us some medicine to take while at home. There was no major improvement.”
Anyeko was advised by a friend to see a traditional herbalist since the doctors had failed to treat her child. So she sought medication from traditional healers who mixed herbs for her daughter to take.
She concurrently administered both the herbs called ‘tee kedo’ and medicine given from the hospital because she wanted to see her child healed of the strange disease that had malnourished and depreciated her.
Alanyo showed signs of improvement for nine months. When she stopped giving medication, Alanyo’s condition worsened and the seizures became more frequent.
Anyeko then put Alanyo on herbs for five years. Still there was no improvement. Today she feels hopeless because her son, Oloya has the same strange syndrome that has tortured him since December, 2007.
“He presented the same signs as his sister so I did not go to the herbalist this time, I took him to Kitgum hospital. Both have been on treatment ever since,” Anyeko says.
She adds that in 2013, some researchers came and prescribed medicine for her son. Oloya’s condition then improved though he remains mentally retarded.
“He looks to have recovered but mentally, we are not sure because sometimes he wonders in the village and his words do not connect well. They are taking medicine daily without changes. We just wait, when they die, we burry. Sometimes you ask God why he keeps them alive with all this suffering.” Anyeko told our reporter as she struggles to hold back her tears.
“Joyce cannot walk or talk. She defecates on herself and I have to feed her else she will die. I have no money to take care of my children because I can’t even dig. Sometimes I cannot afford to give them even porridge or have soap for washing the messed beddings. Every time I have to be monitoring them so that they do not fall on fire.”
She adds that she wanted her children to study so that they can help her in future.
“With this sadness in my life, I feel confused. I consider myself also sick. I pray that God takes away their lives so that I don’t continue to see them suffering. At this age, they should be helping me.”
In 2012, the American Centre for Disease Control took blood samples of the children who presented the signs of nodding syndrome for testing but to date, the victims await their results into the cause of their suffering.
Many of those suffering like Anyeko and her two children await the test results hoping it can lead to the cause and subsequently, the medication for nodding syndrome.
Florence Lakot is a nursing officer at Okidi HCIII. She has handled nodding syndrome patients for three years.
“For most, their mental retardation is so much that they don’t even remember what they say. Mood swings is also common. They are malnourished because parents leave them alone at home without someone to feed them. I don’t know what is going to happen in the long run since there is no improvement. It has become long life medication for them.” Lakot told PML Daily.
She adds that some parents of children suffering from the syndrome have become aggressive on health workers who have no answers to neither the cause nor the cure of what is silently killing their children.
In new Omoro District that was curved out of Gulu in 2016, 35-year-old Lucy Acaa struggles to maintain her three children on medication.
“This month, I got one drug from Odek HCIII, two are missing. They are supposed to take all the three, daily.” Acaa told our reporter.
Acaa says her children were all born normal but they started showing the same sign of sickness one after the other.
Oyat Mao (18 years), Grace Aciro (16 years) and Walter Ochora (14 years) are all sick. When Aciro started showing signs of nodding while eating in 2009, 44-year-old Aldo Olobo knew that another child had acquired the infection. Aciro was only seven and about to begin school.
Shortly after, Ochora also fell ill at the age of eight, presenting the same signs and symptoms as other siblings.
The family started facing discrimination and other children were warned by their parents not to play with the trio lest they too become infected.
“There are many in the community who don’t want this children. Sometimes the neighbors’ children chase them away saying the infection may spread to them.”
Olobo not only worries for the isolation of his children but how to sustain them since he too has a fractured leg.
“Fulfilling the needs of these children is difficult because I am not well. I also walk with a stick. With this problems, we cannot risk sending them to school like their age mates,” says Olobo as his eyes wonder with deep glare into the unknown.
According to Geoffrey Akena, the medical superintendent of Kitgum General Hospital, the sickness was first reported at the hospital in 2007, affecting children between the ages of three to 18 years.
Akena noted that prominence of the sickness began in 2011 with Angagura Sub-county having 583 cases. Inpatients were admitted to manage symptoms as they present, say malaria and fever among others.
He adds that only 30 percent of well managed cases show slight improvement after two years.
“They get better when early signs of convulsion or syndromic progression are managed, which takes about two years.”
Recently, the Minister of Health Ruth Achieng declared to Members of Parliament on the Health Committee that the cause of nodding syndrome had been found.
However, MPs sitting in the committee including Gulu Woman Member Of Parliament Betty AOL Ocan say her report was full of medical terms that they could not comprehend.
Okin. PP. Ojara, Kitgum MP said he prefers government supports doctors on the ground to do research into the cause of the sickness since the American Centre for Disease Control has taken more than six years to release their results.