Survivors must struggle against stigmatisation by a community which blamed them for bringing the disease into their midst
Abibatu, left, and her brother Lanphia fought off Ebola Teri Pengilley
When Abibatu and Lanphia finally returned home from the field treatment centre where they came close to losing their lives to Ebola, they hoped it was an end to the terrible price that the virus which had robbed them of their father and two brothers had exacted from their family.
Instead, what awaited them was a second battle for survival against the disease – this time the struggle against stigmatisation and rejection by a community which blamed them for bringing the disease into their midst in Sierra Leone and sought turn them into outcasts.
The lingering nature of the epidemic which has killed more than 11,000 people in three West African countries was underlined last week when the World Health Organisation announced it had recorded the first week since March 2014 with no new Ebola cases in the region.
At the same time, the UN health body warned that the virus could still cause fresh outbreaks, and its long-term dangers were underlined when Scottish nurse Pauline Cafferkey, who had previously survived the disease, was readmitted to London’s Royal Free Hospital on Friday with an “unusual late complication” from her initial illness. She remains in a serious condition.
But while Ms Cafferkey will receive state-of-the-art care, the rudimentary health system in Sierra Leone – badly hit by the loss of doctors and nurses to Ebola – is just one of myriad obstacles that face survivors in countries that even prior to the outbreak were already among the world’s poorest.
For Abibatu, 18, and her 22-year-old brother, the nature of the challenges they face became clear only after they returned to their native district of Moyamba in southern Sierra Leone following five weeks in a treatment centre.
Other members of their family had not been so fortunate: within the space of 20 days last September, Ebola killed their father, Joseph, 57, a school vice-principal, and their two brothers, Samuel, 20, a trainee lawyer, and Joseph, 28, a surgeon who had contracted the virus while operating.
A loving and studious household, where Abibatu fondly remembers her father taking time each evening to teach her new words or playing draughts with her siblings, was shattered in less than a month. But instead of finding sympathy, Abibatu and Lanphia, a trainee community health worker, found fear and disdain. The ostricisation began even as the family of eight fell ill 12 months ago.
The first Ebola case in its district, the family was effectively put under house arrest with its compound taped off and up to nine armed guards put in place to ensure it could not leave. Abibatu and Lanphia believe they may have been left to perish had not health workers arrived one day to take them to a field clinic.
After beating the virus but still terribly weakened by its effects, the brother and sister were unable to buy food because market stallholders refused to take money they had touched. Even had they been able to make purchases, the motorbike taxi drivers they needed to transport food home refused to let them on their vehicles for fear of bodily contact.
Lanphia, who survived the most lethal, haemorrhagic stage of the illness during which he fell into a coma, weighed his words carefully as he described the reaction of neighbours and relatives to their escape from Ebola. He told The Independent on Sunday: “People told us getting the virus was a curse on our family. That it had been brought down on us because our father had brought us up to be doctors and medics.
“Members of our own family even tried to force us to leave the home left to us by our father. These were the people we depended on to help us and talk to the community, receive us as their brothers and sisters.”
Nurse Pauline Cafferkey was readmitted to London’s Royal Free Hospital on Friday with an “unusual late complication” from her initial illness (PA)
Abibatu, a girls’ rights advocate for the charity Plan International, added: “People dare not come close to us now. They won’t come to the house and some are even afraid to talk to us. At first, the stigmatisation was to our faces. Now it is behind our backs.”
The story of rejection and fresh hardship is not uncommon. There are at least 16,000 Ebola survivors spread across Sierra Leone, Liberia and Gambia.
The brother and sister arrived in London last week to highlight the daunting task now facing these countries – rebuilding shattered economies and health services, and encouraging the embrace of survivors even as the threat posed by the virus remains. A key issue facing survivors is the emergence of a post-Ebola “syndrome” – symptoms ranging from fatigue and chronic joint pain to problems with eyesight leading to cataracts and even blindness apparently caused by the residual effects of the virus.
Doctors say that little is known about the long-term effects of Ebola, though any abiding risk of contagion from survivors – other than by sexual contact, because the virus can still linger in semen – is for the moment at least considered negligible.
When you have the Ebola virus within yourself, you feel so sad. You feel everything is wrong with you. You feel you have no hope said Abibatu.
The ongoing medical problems are just one of several burdens on meagre social and health care resources already diminished by the virus. Plan International estimates that some 8,000 children in Sierra Leone have been orphaned, while many other families can no longer afford school fees. The World Bank estimates that the outbreak has cost the three countries most affected at least £1bn in lost economic growth in 2015.
The formation of survivor groups has given impetus to efforts to end stigmatisation. But serious problems remain. There are suggestions of a rise in teenage pregnancies prompted by a fall in school attendances while there is also a rise in evictions caused by the virus – victims who returned home to find that their tenancies have been rescinded.
Tala Budziszewski, a disaster risk management officer for Plan, said: “The task of reconstruction is massive. The amount of healthcare available was already minute and some of the heaviest losses were among doctors and nurses. Livelihoods need rebuilding, and there is a still a huge amount of awareness-raising to be done in terms of the acceptance of survivors.”Abibatu and Lanphia insist they will be at the forefront of that process. Gone, for example, is the traditional handshake that accompanied most meetings in daily life. In its place has come the “Ebola greeting” whereby each party crosses their right arm across their chest and slightly bows.
Abibatu said: “Our culture has changed. People are wary of each other. When you have the Ebola virus within yourself, you feel so sad. You feel everything is wrong with you. You feel you have no hope. There is no need for you to survive – that is how you feel.
“But we did survive and I feel we must talk about it. I will tell people they shouldn’t be afraid of survivors or sad about it. They should be happy in fact because God has worked a miracle in our lives. It’s not easy to have Ebola and recover again.” Independent 10 October 2015