As the Ebola outbreak grows and spreads, a small but significant group of people is also growing – the Ebola survivors. Emerging shell-shocked from what one described as a “glimpse of hell”, the survivors have not found life easy on the other side of the Ebola ward.
Some in the community brand them as “witches” for surviving. For many, the faces they longed to see again while lying in the Ebola ward are no longer there. Husbands, wives, children, brothers, sisters, mothers and fathers have all been carried off to unmarked graves by Ebola virus disease.
“I am learning to live a new life in the home without my husband and my 2 children. Now there is so much emptiness in the house especially at night,” said Fatimata Gaima who clung to life in the hospital desperate to get home to care for her three year old.
However, as she recovered, her worst fears came true. Her last child was brought to the hospital ward, tested positive for Ebola, and died a few days later.
Survivors gather in Sierra Leone
Ms Gaima told her story to others in a small focus group at the first Ebola survivors conference organized by UNICEF and GOAL, humanitarian agency, in Kenema, one of the areas where the Ebola outbreak first exploded in Sierra Leone. The meeting aimed to identify the needs of survivors – physical, mental, social and economic – and help them to consider how they might contribute to battling the Ebola virus outbreak in Sierra Leone.
Services for survivors are gradually emerging. At one post-Ebola clinic, set up to deal with survivors’ psychological and social needs, it has become evident that physical after-effects of the disease are among the most pressing problems Ebola survivors face.
“We are seeing a lot of people with vision problems,” says Dr Margaret Nanyonga, psychosocial support officer for the World Health Organization in Kenema. “Some complain of clouded vision, but for others the visual loss is progressive. I have seen 2 people who are now blind.”
Dr Nanyonga said that people with what she calls “post-Ebola syndrome” have a range of symptoms. These have been seen in survivors of previous outbreaks and cause long-term disability. Apart from visual problems which affect approximately 50% of Ebola survivors in Kenema, people complain of “body aches” such as joint, muscle and chest pain. They also suffer headaches and extreme fatigue, making it difficult to take up their former lives – especially if it involved manual work – as farmers, labourers and housewives.
Need for more information on post-Ebola syndrome
“We need to understand why these symptoms persist, whether they are caused by the disease or treatment, or perhaps the heavy disinfection,” says Dr Nanyonga who has developed an assessment tool that will be used to establish the most common and disabling symptoms and what can be done to help survivors with these problems.
Dr Andrew Ramsay, field coordinator for WHO in Kenema, says it is essential that potentially disabling physical and psychological problems be diagnosed and, where possible, treated as quickly as possible.
“Eye problems might be caused by damage to the cornea, to the nerves or something else. At this point we do not have enough information to know exactly what is going on. But we need to find out urgently so we can do whatever we can to preserve the eyesight for people who have to try to pick up their lives again.”