Ebola outbreak: Stigma and uncertainty stalk survivors By Tulip Mazumdar

Global health reporter Published duration 4 December 2015

"Can I hug you?" community nurse Joyce Jebambula asks with a beaming smile as she welcomes me back to her village in Hill Station, Freetown.

"Of course," I say as I fling my arms around her. It's a magical moment.

When I visited the area at the height of the outbreak , there was an "avoid body contact" rule in place. It's now been lifted.

One of the most challenging parts of reporting this outbreak over the past 18 months, is that I haven't been able to touch anyone in the worst-affected countries.

When Ebola survivors broke down in tears describing losing their families, I had to almost sit on my hands to avoid reaching out to comfort them.

image caption Survivor Kadiatu, who lost her three brothers, says neighbours look down on her

The outbreak was declared over in Sierra Leone on 7 November. I returned for the celebrations. But despite reaching this long-awaited milestone, all is not well.

Ibrahim Koroma, 21, clings to his survivor's certificate outside the home he used to share with his family in Hill Station. All 17 of them are now dead.

The certificate is one of his most prized possessions. "He does not pose any risk to the community" it reads.

Ibrahim tells me how his landlord has allowed him to stay in one of the rooms of his former family home until the end of the year. He says he doesn't know what he'll do after that. He had been studying maths and science at college, but he can no longer afford the tuition fees. He works as a casual labourer, relying heavily on handouts from neighbours.

media caption Ibrahim's possessions were destroyed for fear they could harbour the deadly virus

His two little sisters and little brother died in the very room in which he now sleeps. He says he often lies awake thinking about them.

He tells me he's exhausted and lonely.

Worst on record

The Ebola outbreak in West Africa was the worst on record.

In past outbreaks there had only been a few hundred deaths and a few hundred survivors. Now there are around 17,000 survivors and scientists are finding out new and unexpected things about the longer-term impact of the disease.

Until this outbreak, it was thought Ebola could stay in semen for only three months after patients recovered. But research in Sierra Leone has now shown it can linger for at least nine months.

Scientists are still trying to establish how long it can persist in the body, and, crucially, for how long it could be infectious.

There's been one known case where a male survivor infected his partner and it was six months after he recovered.

Find out more

The World Health Organization (WHO) says all male survivors should be offered free semen testing so they know their status. But there's only one testing facility in the whole of Sierra Leone.

I spoke to a survivor who was giving samples as part of the Viral Persistence Study, run by the ministry of health, the WHO, and the US Centres for Disease Control and Prevention in Freetown.

Military nurse Sgt Hassan Samura told me how he can never quite relax when he's with friends or family. He said he constantly has a niggling fear over whether the virus could still be inside him and whether he could pose a threat to others.

His anxiety is understandable. The world is in new territory and there are many unknowns.

But the WHO says any such risk is low. It points out that there are thousands of Ebola survivors now and, if they were passing on the virus widely, we'd know about it.

media caption Dr Suzanna McDonald says evidence-gathering is key to reducing stigma

However, the agency is investigating whether new cases reported in Liberia after it was declared Ebola-free in September could have originated from a survivor. Similar questions have been raised in Guinea after the country went two weeks without a case, but then a new infection emerged in someone who had apparently had no close contact with a known Ebola patient.

There have also been a small number of cases where mothers have infected their babies, because the virus lingered in their breast milk. New mothers, who survived Ebola, are now advised against breastfeeding if they have an alternative food supply for their child. Sierra Leone is a poor country, so many don't.

image caption Survivors' body fluids are tested for traces of the virus

In the past few weeks, breast milk and other body fluids, such as vaginal fluids, urine, sweat and even tears have started being tested as part of the Viral Persistence Study.

As you drive around Freetown, tatty old posters showing what do to if a loved one becomes sick are being replaced by shiny new ones showing smiling Ebola survivors with captions like "Welcome Ebola survivors home, they are heroes".

The biggest problem facing people who have recovered, remains stigmatisation.

Many are ostracised and outcast from their communities. They can't get jobs, people are suspicious of them, even small children are shunned by their former friends. It's all because of continuing fear, misunderstanding and misinformation.

As with the outbreak itself, the biggest challenge remains ensuring people understand the facts about Ebola, and about survivors.

image copyright Getty Images

That's why it's so important to establish and back up these facts with scientific evidence and that can only happen if survivors have access to medical follow-ups and are not too scared to come forward - because of stigma.

Many are facing continuing health problems after surviving Ebola.

The medical charity MSF says around 75% are dealing with complications including psychological trauma, headaches, joint pains, extreme fatigue and problems with their eyes.

I met one survivor, Mabinty Kargbo, who had perfect vision and was very active in her community before she became sick.

image caption Mabinty lives in the capital, Freetown, where there is more help available to survivors

Now, many months after recovering from Ebola, Mabinty has all but lost her sight. As I watch her struggle to open her watery eyes, I am reminded of the case of American Ebola survivor Dr Ian Crozier.

I had spoken to him just a few weeks earlier. He explained how - like Mabinty - he became extremely sick a few months after recovering from Ebola and partially lost his vision.

Tests on Dr Crozier found the inside of his eyeball was "teeming" with the virus. The surface of his eye and his tears were clear though.

Mabinty doesn't have access to that level of care and expertise. She was given some basic medicines and reassured that her sight will return if she takes her drugs regularly.

image caption Ad campaign calling for an end to stigma

Mabinty is considered one of the lucky ones in Sierra Leone. She lives in the capital so she has better access to care than anywhere else in the country.

The WHO has described the challenges facing survivors as "an emergency within an emergency". It is urging NGOs, donors and overseas medics and scientists to remain in the country even though the outbreak has been declared over.

As Sierra Leone's President Ernest Bai Koroma told me "we have started a fight that we have not yet finished… we need the international community to stay engaged".

That same evening, thousands of people took to the street to celebrate the end of the outbreak. They danced, they shouted "Ebola's gone away", and they lit candles in memory of the 221 health workers who lost their lives in this fight.

A small contingent broke off from the loud brass band, some holding pictures of loved ones, and began singing,

"We shall overcome, we shall over come some day."

"Deep in my heart, I do believe that we shall overcome some day."

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Read Tulip's other reports on Ebola