DAKAR/MONROVIA (Reuters) - Romeo Doe, a 29-year-old tailor who survived Ebola in Liberia, is struggling to cope with the impact of a disease that killed seven members of his family and now threatens his livelihood.
Since he was released from an Ebola center in the capital Monrovia in November, pressure is rising in his eyes and affecting his vision - a complaint some doctors say is common among survivors of the West African outbreak.
There are a growing number of survivors of the disease in the region, between 5,000 and 10,000 according to the United Nations, and some complain of side effects months after their recovery - a condition some doctors are calling “post-Ebola Syndrome” (PES).
“Since I was discharged I have felt this pain in my eyes,” said Doe. “They, as you can see, are red; they are hurting me. I want the government to help me get back on my feet.”
Ebola, which has killed almost 9,000 people across Guinea, Liberia and Sierra Leone, initially causes fever and vomiting, then attacks the immune system and vital organs, often causing internal and external bleeding.
About 60 percent of Ebola patients have died in the current outbreak, typically from shock or organ failure.
Some of those who have survived the disease report a mixture of symptoms after their recovery, including vision problems, joint pain, hair and memory loss and anxiety attacks.
Margaret Nanyonga, a doctor who treated Ebola patients in the town of Kenema in Sierra Leone, said she had seen survivors go blind. Overall about half of those she saw recover reported declining health, she said.
Doctors say it is not yet clear how long the symptoms last. There is also no scientific literature or medical consensus on any new syndrome among West African survivors or how many people might be affected.
Dan Kelly, founder of the non-profit organization Wellbody Alliance and a doctor specializing in infectious diseases, says the situation can be complicated by poor medical records making it hard to separate any new symptoms from pre-existing conditions. Ebola, like many severe infections, may also weaken survivors and make other illnesses more likely.
Kelly said some Ebola after-effects appear linked to the infection itself, with some patients developing symptoms similar to so-called autoimmune disorders - where the immune system is over stimulated and begins to attack the body’s own tissues. Other patients develop symptoms similar to uveitis, he said, an eye inflammation causing blindness.
“With post-Ebola syndrome there is an autoimmune response: it’s revved up, and we don’t really know why,” he told Reuters by telephone from Sierra Leone where he is helping with the Ebola response.
When Korlia Bonarwolo left an Ebola treatment center in Monrovia last year, his blood was free of the virus but he had caught two other life-threatening diseases: malaria and pneumonia.
The 26-year old doctor’s assistant blames his health problems on poor care, rather than complications related to Ebola infection.
At the John F. Kennedy medical center in Monrovia, draughts from the open-air corridors left him exposed, he says, while frightened nurses threw him juice boxes which he was often too weak to retrieve.
Back home, medical colleagues shunned him and he had to insert his own intravenous drip. Six months afterwards he has fully recovered but, as president of a survivors’ association, wants to ensure others get better support and health information.
“The questions survivors are asking about where they are going to be health-wise in the future deserve answers,” Bonarwolo said at a survivors’ meeting organized by the United Nations.
The outbreak is now ebbing, and the health ministry says there are fewer than 10 cases in the country, but even survivors with no worrying symptoms say it is hard to get back to normal life with so many unanswered questions about Ebola’s impact.
One of the ongoing concerns relates to sexual health. Some female Ebola survivors say they have stopped menstruating. The virus can also remain in semen for months.
The links between Ebola and mental health disorders is also little understood. A friend of Bonarwolo’s survived Ebola only to develop a mental illness afterwards.
Ben Neumann, a virologist at Britain’s Reading University who studies Ebola and other viruses and their effects, notes that Lassa virus, which comes from West Africa and causes a similar disease to Ebola, has also been reported as having longer-term health effects.
“(Lassa) survivors often report signs of nerve damage such as loss of hearing,” he told Reuters, adding that it would be “surprising that something as damaging as Ebola did not have lasting effects”.
The current lack of knowledge about post-Ebola health effects is probably “due to Ebola being a rare virus that left few survivors before this outbreak”, he said.
Some after-effects of Ebola have been reported in previous outbreaks since the disease was first detected in 1976, but past epidemics were smaller and often more deadly, meaning there were fewer survivors to generate interest to warrant research.
So this outbreak creates a unique opportunity to learn more.
Kelly agrees, and wants swift follow-up.
“We are at risk of missing the window,” he said. “We need to start catching survivors as they leave treatment centers.”
Additional reporting by Kate Kelland in London; Editing by Pravin Char