Heather Angel Chandler was at Bar 1919 for a girl’s night out in early 2103 when she first heard about Nodding Syndrome from her friend and neurologist Dr. Suzanne Gazda, and from that moment on she became obsessed with the disease and those suffering from its bizarre effects.
Dr. Gazda told Chandler about the care center she had started in Uganda called “Hope for Humans,” which caters to children with Nodding Syndrome, a disease that stunts the mental and physical growth of children. Chandler was stunned by what she heard, so she set out to apply her own talents and skills to making a contribution by making a feature-length documentary.
The resulting film, titled “A Question of Humanity,” won Best Documentary in the Los Angeles Women's International Film Festival last month and was recently nominated for the same award in Toronto's Female Eye Film Festival.
Children with the disease suffer “head nodding” seizures, hence the name, which cause them to lose control of their bodies – making them prone to injury. Nodding Syndrome is known to affect children in the southern region of Tanzania, South Sudan, and northern Uganda.
“These kids basically become zombies. They wander off and drown in rivers. The people in Uganda cook with an open fire and a lot of them fall in fires and die. A lot of the kids are being raped. The families are so poor that they’ll trade a bag of sugar for people to take advantage of their mentally disabled kid," Chandler said.
“(Dr. Gazda) is telling me this as we are drinking cocktails, and I’m embarrassed that I’m sitting there drinking a cocktail while this sort of thing is happening.”
So Chandler decided to take matters into her own hands and fly to Uganda herself to film those suffering from Nodding Syndrome. Chandler was the founder of Innovative Multimedia Group, a video production company, so she had the equipment and skills to produce award-winning material.
While at Bar 1919, Gazda told Chandler about displacement camps Ugandans were forced into by the government in an effort to protect them from a rebel group called the Lord’s Resistance Army. The group, led by Joseph Kony, aimed to overthrow the government and rule Uganda based on the Ten Commandments. According to War Child, Kony quickly lost support and in frustration began killing innocent civilians.
“They made these camps to keep people safe, but really these camps were terrible. More than 1,000 people were dying a week. There was no food nor water and they weren’t allowed to leave these camps,” Chandler said.
Symptoms of Nodding Syndrome began surfacing in some of the children who were living in the camps. She said the disease only affects people in a small pocket of the world – the same area where the displacement camps were located.
“So the thought is there’s some kind of connection,” she said. “There’s a lot more to the story.”
Dr. Gazda echoed Chandler's words, saying she thinks the disease is environmentally induced by some kind of toxin or chemical exposure.
"It also could have been directly related to the type of food they were given. We know that they were starving in the camps for a couple of decades, and the food that did arrive was not in good condition – it was spoiled and it had mold. It was something we wouldn’t feed our dogs," Dr. Gazda said. "So I think that between all of those issues, yes, it is environmentally induced, whether or not it was intentional, I don’t think we can say."
Chandler arrived in Uganda with a friend and fellow filmmaker and then hit the ground running. Since she was funding the trip herself, she had to continue working her regular job while filming the documentary in Uganda, meaning she worked from about 4 a.m. to 10 p.m. daily.
Chandler stayed with a woman named Collines – one of the less than 1% of women in Uganda who obtain a college degree and the director of operations for “Hope for Humans,” the clinic Dr. Gazda founded.
Dr. Gazda first came across Collines while attending a speech she was giving with Invisible Children in San Antonio.
"We were very much impressed with her ability to carry a message. An authentic message – passionate and real. She’s absolutely phenomenal," Dr. Gazda said.
Collines stayed by Chandler's side throughout the duration of her visit, all the while leading her to remote villages to speak with families about Nodding Syndrome.
She said Colline's job in Uganda is not easy. "Hope for Humans" addresses a politically charged topic, and Collines is forced to walk a political tightrope in what she says and how she acts. Dr. Gazda said the clinic began as a hospice center, but once she noticed improvement in the children's health, she began treating Nodding Syndrome.
"We believe their treatment protocol is actually quite simple. We control their seizures, we correct their malnutrition, and we give them something no one can live without, especially children, and that’s love and lots of hope – and that’s hope for their future," Dr. Gazda said.
*Featured/top image: Heather takes a group photo with the Hope for Humans staff. Courtesy photo.