Doctors treating Ebola in Africa are raising concerns about the emergence of “post-Ebola Syndrome” among survivors of the deadly outbreak.
Ebola, which 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 per cent of Ebola patients have died in the current outbreak, typically from shock or organ failure, but according to the UN there were also between 5,000 and 10,000 survivors in the region.
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.
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.
“Since I was discharged I have felt this pain in my eyes,” he said.
“They, as you can see, are red; they are hurting me. I want the government to help me get back on my feet.”
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 said it was not yet clear how long the symptoms lasted.
There was 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 organisation Wellbody Alliance and a doctor specialising in infectious diseases, said the situation could 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.
Mr 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 was overstimulated and attacked the body’s own tissues.
Other patients developed 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 said.
More survivors means more chance to study impact
Even survivors with no worrying symptoms said it was 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 said they have stopped menstruating, and the virus could also remain in semen for months.
The links between Ebola and mental health disorders was also not well understood.
Ben Neumann, a virologist at Britain’s Reading University who studies Ebola and other viruses and their effects, said Lassa virus, which comes from West Africa and causes a similar disease to Ebola, had also been reported as having longer-term health effects.
“(Lassa) survivors often report signs of nerve damage such as loss of hearing,” he said.
“[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 was 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.
Mr Kelly said this outbreak creates a unique opportunity to learn more.
“We are at risk of missing the window,” he said.
“We need to start catching survivors as they leave treatment centres.”
ABC/Reuters