My Ebola story: My children left school for a term over stigma

When the Ebola virus disease outbreak was declared in Uganda, with Mubende District as the epicentre, several families, who were suspected and confirmed cases, faced rejection by communities due to myths and misconceptions.

This came despite the sensitisation from the emergency response and health teams.
Ismail Kavuma, 58, a resident of Kiyinja Village, Kiruuma Sub-county in Mubende, and survivor of the disease, is one such victim.

He experienced a difficult time when five members of his family, including himself, contracted Ebola. One of them died, another was admitted for weeks on end and the family faced stigma from the community.

Kavuma believes that his 12-year-old daughter contracted the disease from a medical centre located in Madudu Sub-county where had been taken there to receive medical care. At that time, the Ebola outbreak had not been declared. 

His daughter was referred to Mubende Hospital in the second week of September, 2022. By this time, many patients were being referred from this particular clinic to the hospital but nobody knew about Ebola. It was only in the third week of September when the government declared the outbreak that people realised the disease was in the area. Unfortunately, Kavuma’s daughter succumbed to the disease.

“My daughter died in the second week of September 2022. My wife who had nursed the child was already admitted to Mubende Hospital battling an unknown illness,” he says. 
At this point, another of his children, a three-year-old boy, had also fallen sick and was in the hospital with his mother.

“When they tested positive for Ebola virus, I was stopped from taking care of them. This was the time I also felt general body weakness and started vomiting. I also got diarrhoea. The health teams quickly evacuated me to the Ebola treatment unit at Mubende Hospital,” Kavuma shares.
When his wife, Ms Annet Nampenjja, was admitted to Mubende General Referral Hospital, she was very weak but the medical staff attending to her could not figure out what the illness was despite the different laboratory tests. 

He explains that it is possible that his wife was among the very first Ebola patients admitted to Mubende Hospital because the government declared the Ebola outbreak a week after she had been admitted.

Kavuma reveals that he had tested negative for the disease when the blood samples were tested the first time. However, the second blood sample returned positive results.

Later after he had been admitted, another older daughter of his was also admitted. Before then, Kavuma says, he had not seen his wife and child for more than 10 days because the Ebola treatment unit was restricted to only the medical teams.

“When I looked at my child and wife, I got frightened although I was equally very weak at the time I was transferred to the ward. It was messed up. All the patients were struggling and many were dropping off their respective patient beds and crying for help,” Kavuma says.

Many survivors claim that patients would develop mental challenges and would start undressing andshouting. The same happened  to Kavuma. He remembers the time he struggled and fell off his bed at the ward countless times. Because of his body size, the medical teams and patients abandoned him on the floor for some time. He was only lifted back to his bed after he had calmed down and would not fall off the bed. He lost appetite for food for more than five days.

“I could only take some juice after the medical teams convinced me that if I failed to drink the juice, I would die. I had already witnessed patients that had collapsed and died at the ward,” Kavuma says.

“I thank the medical staff and the hospital for ensuring that we had enough fruits and the juice to eat and drink. I had never experienced such a loving and caring medical team. They became caregivers and wanted us to get better,” he adds.

After spending two weeks at the ward, Kavuma and his son got better.

“We soon got the good news that we would leave the patient ward after testing negative,” he says, adding that he and his son got discharged but his wife remained at the hospital for two more weeks.

Getting back to the community
When the family left the hospital, they remained confined at their home at Kiyinja Village, Kiruuma Sub-county, for the first three weeks. 

Kavuma explains that many people feared to come to his home yet they had no food to eat.
“We were discriminated against by the community. When we sent the children to go and buy some items at the nearby shops, the shop attendants nearly chased the children away. They did not want to touch the money,” he says. 

Despite the sensitisation by the health teams, a section of the community believed that our home had the Ebola disease and were afraid of coming to our home. They only waved from a distance,” Kavuma adds.

Later, when his children went to school to complete their third term, they were stigmatised by their fellow pupils. A section of the children refused to share the desks in class with them and named then Ebola. The two children then reportedly stopped going to school for the rest of the term.

“I felt much pain when my two children dropped out of school over discrimination. They could not share the same desks and became lonely in school,” Kavuma says.

“It took a whole month for a section of the residents to accept my family members as normal and Ebola-free. But I do not blame the community for the discriminative acts because of the myths and misinformation. The community believed that the Ebola virus disease could easily spread from my family since we had spent time at the isolation facility in Mubende,” Kavuma says.

He believes that the absence of a vibrant community health care system and the failure by the government to ensure that the village health teams get a monthly remuneration partly compromised the health of the residents.

“If we had a vibrant health team at the grassroots, the Ebola virus disease would have been detected early before it claimed lives. The patients got treatment at the nearby clinic without realising that the Ebola virus disease was already in the community,” he says.

Kavuma ends on a positive note, however, thankful for those who took care of the patients.
“I don’t know how the emergency response teams identified the health teams that worked at the Mubende Ebola treatment unit. The health workers were very caring despite the fact that they were dealing with a deadly disease,” he says.

Looking back

January 11 marked 113 days since the start of the epidemic in Uganda. Under the WHO’s criteria, an outbreak of the disease officially ends when there are no new cases for 42 consecutive days -- twice the virus’s incubation period. WHO said in total there had been 142 confirmed cases, 55 confirmed deaths and 87 recovered patients, with children among the victims.