Filda Anyeko 47 and her husband Leo Onaba 52 lived a life many of their folks envied. God blessed them with six children. But 18 years ago, the sense of happiness vanished and was replaced by fear, confusion and uncertainty when a strange disease suddenly struck two of their children.
Joyce Alanyo and Emmy Oloya now 24 and 22 years respectively were six years and four years respectively back then. They were so full of life, ready to go to school when they were attacked by a strange disease that manifested itself through shaking of the head.
Our reporter met with the family in their village of Lagwal, Okidi Parish Labongoamida Sub County in Kitgum district and narrated their ordeal.
Anyeko narrates how it all started: “It was at around 2am in June, 2000 when she heard one of the children acting in a weird way, like an evil spirit had possessed her. I got up and I was scared. Alanyo convulsed and lay still for about 15 minutes, occasionally gasping for breath.”
Alanyo is among the first cases of Nodding Syndrome reported at Kitgum General hospital in 2000. The doctors treated it at that time as malaria.
She adds: “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 on the doctors discharged her and gave us some medicine to take at home. There was no major improvement.”
Anyeko was advised by a friend to see a traditional herbalist since the doctors could not treat her child to get well. So she sought medication from traditional healers who mixed herbs for her daughter to take.
She combined herbal concoctions which she obtained from herbalists together with western medicine because she wanted to see her child recover from the strange disease that had disfigured her daughter into an emaciated child.
The child showed some slight improvements for 9 months. When she stopped giving medication, Alanyo’s condition worsened and the seizures became more frequent.
Anyeko then put her daughter on herbs for five years. Still, there was no improvement. Today she feels hopeless because her son, Emmy 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.”
She adds that in 2013, some researchers visited her and prescribed medicine for her son. Oloya’s condition then improved but remains mentally retarded.
“He appears 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 bury. Sometimes you ask God why he keeps them alive with all this suffering.”
Anyeko told our reporter as she struggled to hold back her tears.
But Joyce’s life has remained a mess and a source of tears for the family.
“Joyce cannot walk or talk. She defecates on herself and I have to feed her or 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 monitor 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.”
The World Health Organization (WHO) says that as of 2012, more than 3000 cases of were recorded by authorities in Uganda. The disease has mostly ravaged the three districts of Pader, Kitgum and Lamwo. New cases have also been reported in Gulu, Amuru, Oyam and Lira.
In 2012, the American Centre for Disease Control (CDC) took an entire family to the US to study them with the view to finding clues and possibly solutions to the enigmatic disease.
Since it was reported, the Ministry of Health says it has conducted over 14 studies into the nodding syndrome have been carried out.
One of the most detailed studies was the so-called Genetic Study that was carried out in 2012 by CDC together with Centers for Disease Control and National Institute of Health of the United States.
Dr. Jane Ruth Achieng said in a statement released recently that: “The results of this study suggest that Nodding syndrome may be an autoimmune disease, in which the immune system incorrectly attacks the body’s own proteins.
The immune system creates antibodies to fight off the parasite following infection with Onchocerca volvulus (transmitted by the black fly). However, those antibodies also bind to a protein that is present in the brain cells so the immune system-incorrectly-will attack brain cells that contain that protein, which can result in symptoms of Nodding syndrome.”
Achieng adds that the government has taken steps to control the spread of the black fly through aerial spray and dousing of water bodies in the affected areas.
Achieng noted however, that there is no definitive cure yet for the condition.
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 3-18 years.
Akena noted that only 30 percent of well managed cases show slight improvement after two years.
However, MPs sitting in the health committee including Gulu Woman Member Of Parliament Betty AOL Ocan say her report was full of medical terms that they could not comprehend.
Okin Ojara, an MP from Kitgum district however argues that in order to have conclusive figures, the needs to support doctors to conduct an independent study to carry out research.
According to Minister Achieng, another study by Makerere University is ongoing and its results are expected in two years time.