Liberia: Ebola Survivors Network Eases Transition Home

Non-governmental organisations (NGOs) mobilize in support of Ebola victims.
28 April 2016

Monrovia — Josephine Karwah held back tears as she recounted being abandoned by friends and neighbors. The twenty-nine-year-old had contracted Ebola while taking care of her sick parents. Both of them died.

Josephine beat the odds and survived, despite being six months pregnant. But only a few days after she was discharged, she felt unwelcome in her Monrovia community.

"Everybody started to run away from me," she said. So Josephine packed her things to go back where she felt at home: The Ebola treatment center. "It will be better when I am there," she thought.

Though she was talked out of trying to return to the treatment center, the stress of stigmatization started to take its toll on Josephine's pregnancy. "My stomach began to hurt," she said. "I started frequent urination."

She began to try to reach several neighbors with vehicles to take her to a hospital. There was one excuse after the other. No one came.

"So I bear it until the next morning when an older woman and I walked on the road," she said. Taxi drivers refused to take her, when they noticed she looked sick. She began to grunt of excruciating pain. Some women in the area who visibly shared her emotion looked on. "They cried, but couldn't come closer," Josephine said.

She then felt the baby coming. Although she kept the pregnancy during the weeks of treatment when she had the Ebola virus, now she was losing her baby. "I had miscarriage in the street," she said. The women, while maintaining their distance, held wrappers around her to block her from view of passersby.

Choking on her words now, Josephine said that with little strength remaining, she had to wrap the dead fetus. It was a boy. She left him by the roadside and went home.

Josephine's ordeal epitomizes the exclusion and stigma hundreds of Ebola survivors in Liberia still face.  Although the outbreak claimed the lives of nearly five thousand people in the country, about 1500 survived the disease. And for them, the nightmare continues. The joy of surviving was short lived, as the family members and neighbors they longed to rejoin while at the treatment centers haven't welcomed them as they had hoped.

Some, like 34-year-old Prince Dahnyea, came back home to find that they no longer had a job. "It was that moment that I was going to die, even though Ebola didn't kill me," Prince said. He was talking about being chased away from his job site at the Liberian broadcasting system. He was one of the few workers on duty during the height of the crisis. However, Prince was sent home for 21-days, the incubation period of the virus, when word reached his office that his mother-in-law had contracted Ebola.

Prince fell sick too, but fortunately survived the disease, unlike his mother-in-law. He decided to report back to work. On reaching his office, "The security called crowd on me," he explained. They prevented him from entering, fearing he still had Ebola.

Soon a group gathered around Prince. "I started to sweat and felt like I was going to die". He wondered why he was being shamed this way by an entity he served during the crisis. Prince was dismissed a few weeks later.

Josephine and Prince are now senior officials of the national Ebola Survivors' Network, a group that was recognized in August of 2014 by the Liberian Ministry of Health and Social Welfare. As advocates for members faced with stigma, trauma, fear, eviction from homes, joblessness and other social perils, the network represents nearly 1500 survivors and works to collaborate local and international efforts to handle their problems. Josephone, the group's National Program Chair, makes sure donations from groups such as the UN Children's Fund Unicef and the World Food Program reach actual survivors.

Since the formation of the network, the Health Ministry has galvanized support from partners to provide livelihoods, as well as medical and psychosocial support, according to Reverend Meekie Glayweon, National Coordinator of the Survivors Network at the Ministry of Health. She says the government has now developed a Survivors Policy, a five-year plan which will cover social welfare, food security, nutrition, medical and other problems survivors struggle with. "That policy has been developed; it's has been validated. So we are looking at supporting them for those numbers of years," Glayweon said.

But like many others, Josephine and Prince also grapple with post-Ebola syndromes. "Sometimes my brain gets so hot like fire in my head", Prince says while squinting. He faces problems with his sight too. A study earlier this year by a team from the American National Institute of Neurological Disorders and Stroke revealed that most survivors had some neurological abnormalities, such as problems with eye movements, tremors and abnormal reflexes. Other common conditions were weakness, headache, memory loss, depression, muscle and joint pain.

After leaving the treatment centers, and with their relatives gone, Josephine and Prince were like other survivors whose only wish was to be loved again.  Fortunately, a faith-based group which works with young people, Young Life, provided them just that opportunity. "They took us [Ebola survivors] for a camp", Josephine said. It was the first time since being discharged for her to mix with other people.

The group's Regional Director, James Davis, says, "Even though we didn't have medical background," they were heeding the national call to help survivors. "As medical doctors worked to cure infected people in the treatment centers," he says, "we thought breaking the transmission and stigmatization at the community level was important".

During the crisis, the group gave out food items to survivors and those who were quarantined in their homes, suspected of having the virus. "We thought the best way to end the stigmatization was to bring the survivors together; hear their stories and show them love," James said.

For Josephine, that was what she so desperately needed. "I started to laugh again" she says. "Now I feel I can really be somebody."

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