Congo's Ebola survivors unite to combat stigma and misinformation
BY Kahindo Sifa Bahati 8 December 2021
Congolese nurse Guilaine Masika Mulindwa is unfazed when crying babies drown out the voices of the Ebola survivors in her support group.
For Mulindwa - herself a survivor, they are a powerful symbol of new life after the tragedy her community has lived through, and a way to challenge the stigma surrounding the deadly disease in the Democratic Republic of Congo.
"Never miss any opportunity to go out with your babies in public, it will shake the community members out of their ignorance," Mulindwa told the meeting in her home city of Butembo in eastern Congo.
"Many still believe that we survivors can't have any more children, or that if we do, they'll be deformed. So the good health of your babies will speak for itself."
The 46-year-old head of the Butembo group thinks survivors have a key role to play in combating the disease and the misinformation that surrounds it.
Butembo was one of the epicentres of the last major Ebola outbreak, which killed more than 2,200 people and infected over 1,100 others between 2018 and 2020.
The Ebola virus is spread through contact with body fluids and is highly contagious. It causes sudden fever, intense weakness, muscle pain and a sore throat that can progress to vomiting, diarrhoea, and both internal and external bleeding.
It was the deadliest outbreak the country had seen, its duration lengthened by the difficulty of accessing virus hotspots in a region that has suffered decades of violence and instability.
Yet survival rates were higher than in previous outbreaks thanks to a new vaccine - health workers inoculated more than 400,000 people in Congo between 2018 and 2020 - and more effective treatments.
Now, many of those who survived are seeking ways to ensure others in their community do not have to go through what they suffered.
They call themselves "les vainqueurs" - French for "the victors" - and have formed groups across the region affected by the outbreak, aiming to support each other and spread awareness of the disease.
Dozens turned out to attend the group meeting in Butembo, many carrying young children. Some wore facemasks made from brightly printed fabric.
Many of the Ebola survivors have struggled to return to their former lives as they deal with the fear of relapse, long-term health issues, and stigmatisation by families and neighbours.
Some have even been accused of faking their illness as part of a money-making scheme in collusion with local officials - a suspicion linked to the foreign aid money that Ebola brought.
But they are living proof that Ebola can be overcome, and have a key role to play in preventing future outbreaks, said Abdoulaye Yam, Ebola incident manager for the World Health Organization (WHO) in the eastern Congolese city of Beni.
"Survivors are best-placed to explain to their communities what they experienced, what care they received, and they can help explain the different interventions needed to control an Ebola epidemic," Yam said in emailed comments.
Nurse Muhiwa Maheshe Mululu, 56, runs a survivors' association, that covers the eastern Congolese towns of Biakato and Mangina, where the 2018 outbreak started.
As a survivor himself, he now conducts outreach work in his community, raising awareness of the dangers and encouraging people to seek medical attention if they have symptoms.
But he said he was initially sceptical about Ebola.
In the early days of the outbreak, Mululu hid people who had symptoms but who feared going into treatment centres because they saw them as places people went to die. Then he fell sick.
When he was taken to the treatment centre, his friends and neighbours burned tyres in protest, demanding his release.
"When I started to get better, I thanked one of the doctors in the centre. He smiled and told me that I should spread the message about what I had witnessed here to all those people who had burned tyres," he recalled.
"He told me, 'People have protested. It shows that you are a leader in your neighbourhood. When you get out of the Ebola treatment centre, you have to go and testify about the realities of what you have experienced here, this may save lives'."
Now Mululu works with the government to spread information around Ebola, giving talks to community groups about his experience of recovering.
But it took time to make an impact.
People were sceptical at first, accusing him of going over to the other side - that of the emergency responders.
"When I saw that speaking to people collectively wasn't working, I targeted the main resisters, seeing them one-on-one at their homes or places of work.
"I managed to convince some of them and the result was less violence against the emergency teams."
Clusters of Ebola cases have occurred in eastern Congo since the last outbreak was declared over, most recently in October.
Suspicion and fear of outsiders have made monitoring for such cases more challenging.
During the last major outbreak, clinics and vehicles operated by foreign aid groups were attacked and many people who fell ill spurned dedicated treatment centres, turning instead to traditional healers like Roger Mumbere Katsuva, 42.
When Ebola broke out in his community in Butembo in 2018, Katsuva thought it was witchcraft.
He treated patients without protection and prepared bodies for burial - a known means of transmission. When he fell ill, he hid from the authorities and tried to cure himself with ginger powder mixed with eucalyptus and other plants.
His experience changed his life - and his mind.
Eventually, Katsuva overcame his fear of the Ebola treatment centre and was cured.
Today, he works with health authorities, referring potential patients to them rather than trying to treat them himself.
"Many of my patients lost their lives, and I nearly did too," he said. "Ebola has shown the limits of traditional practitioners, and that's something I say often to others in my field."
But his change of heart has come at a cost. It angered some people in his community so much that he received death threats and was forced into hiding.
Many of the survivors said they had faced isolation and been ostracised by their families and communities.
As a result, they have mobilised to support each other and groups like the one run by Mulindwa, the Butembo nurse, have sprung up in the towns and cities worst-hit by successive outbreaks of Ebola.
Mulindwa had to move house after her home was attacked and her children bullied because she had fallen sick.
"Psychologically, it greatly affected me ... without my family I would be really lonely," she said.
Merveille Agasa, 25, also had to move away from his home after he finally recovered.
When he was discharged from the treatment centre, his mother made him spend the night in an outbuilding.
"My mother (told me) I was no longer her son, that I was just coming from the dead. It hurt me a lot," said Agasa, who now lives in a basic wooden house by a river in Beni.
At one point, he grew so desperate he thought of joining the Congolese army or one of the armed groups that operate in the area, hoping for an early death.
But after he recovered he got work taking care of other survivors - something that brought him comfort.
"It was not an easy job," he said, recalling how he had feared being reinfected. "Despite the fear, I did this work with love and, above all, determination to save lives."
When new Ebola cases were reported in October, Agasa and other survivors went door-to-door to tell people about the disease, collecting data about deaths and checking for possible sufferers who needed hospitalisation.
Flare-ups after a major Ebola outbreak can be caused by latent infections that linger in the semen or breast milk of survivors, said Yam from the WHO.
One study based on an outbreak in Guinea and published in science journal Nature this year showed survivors could transmit the disease nearly five years after the original infection.
Yet they also have a degree of immunity, according to the U.S. Centers for Disease Control and Prevention (CDC).
Mbong Eta Ngole, deputy country director for programmes at International Medical Corps, a humanitarian aid organisation, said that had allowed survivors to be on the frontlines of both the 2018-20 outbreak and a smaller one in February.
Survivors cared for the sick, delivered blood samples and educated the community on Ebola, sometimes hosting radio or television programmes, and took care of orphaned children whose parents had died from the disease.
"(Working with survivors) is a way to say yes, there is a risk, but this is an asset in your community," Ngole said.
"We're trying to change the narrative (and show) them that, in a community where you have survivors, it's an extra resource."
Congo's government set up a programme during the 2018-20 outbreak to provide aftercare for survivors, including psychological support and help with community reintegration.
But they could only access that help for 18 months and more than 1,000 of the survivors no longer receive any assistance.
Mumbere Muyisa Scoda, regional coordinator of the initiative, said health authorities were facing a "very serious problem" keeping tabs on survivors after they were discharged and was looking to reactivate the system.
Researchers point to a need for Ebola survivors to be more closely monitored to prevent reactivation and transmission of the virus and future outbreaks.
Given the limitations of the local authorities in a region beset by violence, instability and crushing poverty, the WHO's Yam said survivors' associations had increasingly stepped up.
He praised their work in persuading people to cooperate with decontamination, monitoring and vaccination programmes.
But the survivors' groups cannot do everything.
Mululu said he hoped the Congolese government and the WHO would bring back free healthcare for Ebola survivors, many of whom suffer lasting physical and psychological effects.
"Ebola has made us weak, our members fall sick every day," he said. "Most of the survivors are unable to resume farming, even though it is the main source of income here, and that makes us vulnerable."
Complications can include headaches, muscle and joint pain, loss of vision and memory loss.
Among those who attended the recent meeting in Beni was Kavugho Kitambala, who was determined to attend even though she now needs a stick to walk.
After she recovered from Ebola, she trained as a seamstress. But she tires easily and is in constant pain, making it difficult to work.
"Because of my fragile health I cannot sew my clients' clothes on time, which often results in arguments and they do not come back to me," said Kitambala, who now has to rely on her four school-age children to work.
"They decided to stop studying when they saw I could no longer pay the school fees. My eldest daughter, who is 17, makes doughnuts and her younger brothers sell them in the market."
Facing opposition from within their own communities, many survivors have found comfort in solidarity with each other.
The groups raise funds to help train struggling survivors in new occupations, from hairdressing to tailoring, and provide help with weddings, funerals, births and sickness.
On the day of a recent meeting in Beni, the community had been roiled by reports of fresh cases of Ebola, ensuring a higher than usual turn-out.
As participants gathered outside the meeting room, health workers wearing biohazard suits, goggles and gloves filed past. The body of the latest victim was being moved to a nearby cremation spot.
Fearing they would be treated with renewed suspicion, survivors called for the government to send a doctor to explain to the community why the disease had returned.
"They don't help us when they declare an epidemic and they don't want to explain to the community why it has come back," one young woman told the meeting, to applause from others.
"Everyone is pointing the finger at us and saying it's us."
This story is one in a series supported by UNICEF in the Democratic Republic of Congo.
Reporting: Kahindo Sifa Bahati
Writing: Emeline Wuilbercq
Text editing: Claire Cozens
Photography: Hugh Kinsella Cunningham
Producer: Amber Milne
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