A devastating illness rocked Uganda, then disappeared. Disabled children — and a mystery — remain

Two decades ago, in a small pocket of Northern Uganda, something peculiar and tragic started happening. Children began suffering seizures, not just occasionally but numerous times a day. Their neck muscles would go temporarily limp, causing their heads to bob.

The illness came to be called nodding syndrome. Nobody knew where it came from, but it devastated many of its victims, causing severe developmental delays and psychiatric disturbances. Many died from having seizures at unfortunate moments that resulted in burns, falls, or drownings.

Then it disappeared, just as mysteriously. No new cases have been reported since 2015, according to the Ministry of Health.

But the outbreak left behind more than 2,100 children with lifelong disabilities, overwhelming their families and the region’s capacity to care for them. In Uganda, nodding syndrome is seen in 0.7% of children aged 5-18, but in certain districts the prevalence is as high as 4.6%. It hasn’t helped that a nonprofit that operated two clinics that fed and treated many of the kids ran out of money and shut down in 2017.

Children with the syndrome require constant supervision, because a seizure could strike at any moment and the disease hinders their behavior and decision-making abilities. “These children are not easy to handle, and most are neglected by their parents,” who have to provide for the rest of the family, said Robert Okot Ademo, a nurse who worked at one of the now-closed Hope for Humans clinic in Northern Uganda.

“You cannot go to the garden and dig because you have to watch the child,” he said. “Sometimes the children end up getting tied up on the trees so the parents can go and look for food for the children.”

Lucy Acaa, a 37-year-old mother of nine who lives in the hard-hit Omoro District, described similar difficulties. “When I found out two of my children had nodding syndrome, I was heartbroken. The challenge I am facing right now is that I don’t have time to work,” she said in an interview in her native language.

Her children Grace and Walter were diagnosed in 2005 and 2009. “When the children get seizures, they often wander off since they are not in their right state of mind. … You have to take care of them all the time,” she said. “I no longer see happiness in them since they got sick.”

There’s much debate about the cause of the disease. Nodding syndrome occurs in the same areas where river blindness is also prevalent, and this association has led some researchers to believe that the same parasitic nematode, Onchocerca volvulus, may be a culprit in both illnesses. But O. volvulus is not known to invade the central nervous system, so it’s unlikely to be responsible for the neurodegenerative process that occurs in patients with nodding syndrome.

Another theory is that the syndrome is caused by a virus carried by the black fly, the same vector as with river blindness. Other proposed etiologies include measles, malnutrition, toxins, and autoimmunity.

The fly explanation is supported by the fact that the end of the outbreak coincided with a Ugandan government campaign targeting black flies. In 2013, the government began spraying rivers with pesticides, as well as larviciding the fly breeding sites along the rivers.

Some families in affected communities and researchers are doubtful of these theories, however, and believe nodding syndrome had something to do with fighting in the region between the locals and the Lord’s Resistance Army in the 1990s and early 2000s.

“Most of them believe and they say, that when there was no war in Northern Uganda, there was no nodding syndrome,” said Ademo.

Some point to possible exposure to toxic weapons, or to the prepared food they were fed in camps. “For now, we think the common theme in the three sites where there is nodding syndrome, Northern Uganda, Tanzania, and South Sudan, is that the people were displaced into a kind of camp and fed food rations,” said Dr. David Kitara Lagoro, who worked as the lead researcher for nodding syndrome at Gulu University in Uganda and was also a member of a national task force on the illness.

So far, there is no cure for nodding syndrome. The best available treatments include giving anticonvulsant drugs to limit seizures, optimizing nutrition, and providing physical and cognitive therapy and social support.

Dr. Alfred Mubangizi, program manager for nodding disease at the Uganda Ministry of Health, said the government has focused on supportive care: “At the moment, we are managing the roughly 2,000 people who already have brain damage. Some of them are improved and they can go to school,” he said. But many children don’t get enough food, he said. “So, we are looking at ways to help feed those who are disabled. The big challenge is that we do not have the funds to support them.”

Hope for Humans was established in 2007 and opened its first Care Center in 2012 in a village called Odek. “No one was doing anything for these kids,” said its founder, Dr. Suzanne Gazda. “So, we set it up and screened the children. We started with 30 kids. After a while, the kids got better.” Children were fed and given medications and rehabilitation services. Some were able to return to school.

Lagoro, who also worked for the nonprofit, said, “We set up the rehabilitation center and it worked. The children really improved. They grew up, they put on weight, their cognitive functions improved, and they were better off.”

The charity, however, couldn’t raise enough private funding or government support, Gazda said: “So we had to close our doors. … Most of the kids have died. I think with us pulling out, we were their only hope.”

Acaa’s children were among those treated at the clinic in Odek, and now she’s caring for them on her own. “When they closed the Hope for Humans center, my life and the lives of my children became hard, especially when it comes to feeding,” she said. “At the center, food was enough.”

She tries to remain positive, however: “I have hope that one day this disease will cure if God performs a miracle.”

Documentary photographer Esther Ruth Mbabazi contributed reporting from Odek, Uganda. Her photographic project on nodding syndrome in Northern Uganda was supported by the Pulitzer Center on Crisis Reporting.