Survivors of Ebola face second 'disease': stigma

by Boubacar Diallo
In this file photo taken on Monday, March 31, 2014, UNICEF health workers teach people about the Ebola virus and how to prevent infection, in Conakry, Guinea. The Ebola outbreak in West Africa has claimed some hundreds of lives, and is almost always fatal with horrific suffering including bursting blood vessels, there is no vaccine or known effective treatment, but it seems a handful of infected people have survived. However those who survive the horrors of the disease have to cope with being outcast by everybody, such is the fear people have of Ebola. (AP Photo/ Youssouf Bah, File)

The doctor has beaten the odds and survived Ebola, but he still has one more problem: The stigma carried by the deadly disease.

Even though he is completely healthy, people are afraid to come near him or to have anything to do with him.

For example, the man was supposed to give an interview on Guinean radio to describe his triumphant tale. But the station would not allow him into the studio.

"We'd prefer he speak by phone from downstairs," the station's director told a representative of Doctors Without Borders, while the survivor waited outside in a car. "I can't take the risk of letting him enter our studio."

The Ebola outbreak in West Africa has claimed more than 145 lives so far. More than 240 people, mostly in Guinea, are suspected of having caught the illness, which causes horrific suffering, including bursting and bleeding from ears and other orifices. There is no vaccine, no treatment and the disease is almost always fatal.

But a handful of the infected do survive. About 30 patients have survived in Guinea so far, according to Doctors Without Borders. Liberia has not recorded any cases of survival.

Unfortunately for the lucky few, the stink of stigma lingers long after the virus has been purged from their bodies.

"Thanks be to God, I am cured. But now I have a new disease: the stigmatization that I am a victim of," said the Guinean doctor, who spoke to The Associated Press but refused to give his name for fear of further problems the publicity would cause him and his family. "This disease (the stigma) is worse than the fever."

Several other people who survived the disease refused to tell their stories when contacted by the AP, either directly or through Doctors Without Borders.

Sam Taylor, the Doctors Without Borders spokesman who had taken the doctor to the radio station, confirmed that the man had been infected and survived.

The doctor believes he caught Ebola while caring for a friend and colleague who died in Conakry, Guinea's capital. At the time, he said, he did not know that his friend had Ebola.

Shortly after his friend's death, the doctor got a headache and came down with an intractable fever. And then the vomiting and diarrhea began.

"I should have died," the doctor said, but he responded to care, which includes intensive hydration, and unlike most other Ebola patients, he lived.

Surviving Ebola is a matter of staying alive long enough to have the chance to develop enough antibodies to fight off the virus, said David Heymann, a professor of infectious disease epidemiology at the London School of Hygiene & Tropical Medicine.

That's because it's typically the symptoms of Ebola—severe fever, hemorrhaging, dehydration, respiratory problems—that kills a patient.

Even though he has been cleared of Ebola, the doctor says that people avoid him.

"Now, everywhere in my neighborhood, all the looks bore into me like I'm the plague," he said. People leave places when he shows up. No one will shake his hand or eat with him. His own brothers are accusing him of putting their family in danger.

Stigma often accompanies the spread of deadly, poorly understood diseases, said Meredith Stakem, a health and nutrition adviser for Catholic Relief Services in West Africa, noting that the terrified reaction to Ebola recalls the early days of the HIV epidemic.

Ebola may incite an even more severe reaction because health workers responding to it wear head-to-toe protective gear that look like space suits, Stakem noted.

In this outbreak, the homes of some of the infected in Liberia have been attacked and Doctors Without Borders briefly abandoned a clinic in Guinea that was targeted.

The families of those who die from Ebola face similar problems.

Aziz Soumah, who lives in a suburb of the Guinean capital of Conakry, said his family was forced to move after his brother died, apparently from Ebola.

"I went to pray at the mosque. As soon as I entered, all the worshippers left the mosque," recounted Soumah, a 30-year-old engineer. "I was alone. No one around me."

International health organizations are doing extensive community outreach to explain how the disease is transmitted—only through direct contact with the bodily fluids of symptomatic people—and to explain that those cured are no longer contagious.

The most powerful tool to combat stigma is the way health care workers treat a discharged patient, said Corinne Benazech, the representative in Guinea for Doctors Without Borders in Guinea.

"The patient never leaves alone," she said of when Ebola survivors leave their isolation wards, and health care workers individually shake hands with the survivor.

Discharged patients receive a certificate from the minister of health that states they are no longer contagious, said Tom Fletcher, an infectious disease physician with the World Health Organization who is working in Guinea. However, the virus may linger in a male patient's semen, so men are given a three-month supply of condoms, he added.

The Guinean doctor was treated for about a week before he was declared cured. Fletcher said that's typical for the miraculous few: "These people should be celebrated, really, as opposed to stigmatized."

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