Now that the Ebola outbreak has waned in West Africa, fewer stories are hitting the news. For those who suffered from the disease, however, the nightmare is far from over. Survivors suffer a range of post-disease challenges, from loss of eyesight to ostracism within their own communities.
 
 
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."
 
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".
 
Post-survival effects
 
"There is so little written about post-Ebola problems," said Maggie Nanyonga, a WHO consultant working with Ebola survivors in Kenema district. "We don't know if it's the drugs that are causing it, or the disease, or just stress."
In a small room at the government hospital in Kenema, now known simply as "Psychosocial", volunteers busily transcribed forms with survivors' complaints. "Serious backbone pain. Difficulty breathing. Properties burned but not replaced," reads one.

"Ear and joint pains. Poor health with red eyes," reads another.

WHO's Maggie Nanyonga helped set up the clinic [Tommy Trenchard/Al Jazeera] 


"Tired legs and weakness. Cannot see clearly," reads a third.

 
Health education officer Michael Vandi said the eye problems are of particular concern. "We just weren't expecting this. A lot of them are experiencing it, often combined with headaches," he said.
 
The head of the hospital's eye department, Ernest Challey, said he believes he has found the cause - a condition called Uveitis that occurs when the innermost coating of the eye becomes inflamed. It is triggered by problems with the immune system, a viral infection, and sometimes trauma, he explained. It leaves patients with dim and blurred vision, and pain when they're in bright light. If left untreated, said Challey, it can lead to blindness.But the physical symptoms are just a part of the immense challenge many Ebola survivors face. "Sometimes I cry when they tell me their stories," said one nurse after writing down Kamara's details in the post-Ebola clinic, the first of its kind.
 
Of all the survivors interviewed, the horrifying experience of 38-year-old Zidane Konneh best exemplifies the problems they face - though with one bizarre twist.
 
A story of survival
 
Thinking he was dead, hospital staff had put him in a body bag and thrown him onto a truck that was to take him off to be buried. British nurse Will Pooley, himself now an Ebola survivor and the only British citizen to have contracted the disease, had noticed movement from the bag and opened it to find Konneh still alive.

 

An Ebola graveyard in Kenema, Sierra Leone [Tommy Trenchard/Al Jazeera] 
Konneh survived but a staggering 38 members of his extended family died. Those still alive became social pariahs. The family was kicked out of their compound in the leafy Kenema suburb of Coca Town, which lies nestled at the base of the rolling Kangari Hills. All the family's possessions had been burned in their absence. Even the 500,000 leones ($116) savings Konneh had stashed inside his mattress went up in flames.
 
Now they live in the house of Konneh's dead brother - another victim of Ebola - but when the lease runs out next month, the family will have nowhere to go. They have little money as nobody will hire them. Konneh's colleagues at the mechanic shop he used to work at no longer want him around. "In this country you are nothing without a job," he said, sitting in the shade of a mango tree outside his new residence. "We can't even borrow water from another compound," he added. "They say we are all Ebola people living here. They are afraid of us. If you go crying for help they will just laugh at you. There is no sympathy in the community."
 
 
Zidane Konneh and his family are among many who survived Ebola, but now find themselves ostracised [Tommy Trenchard] 
Many of those now staying with Konneh are fellow survivors, and most suffer from some kind of post-Ebola ailment. His mother, now bereaved of most of her grandchildren, cannot see properly and said her legs are so weak she can't walk more than a kilometre.
Behind her, 16-year-old Fatmata complains of pain in her sides. Another teenager, Yahya, said his hips have been sore ever since he survived Ebola. Konneh himself has been left impotent.
"It's been three months but still I'm not ok in my private parts," he said.
 
The family said when they visit the new survivors' clinic they are given pills, but the symptoms remain. Abubakar Sowa, head clinician at the post-Ebola clinic, agreed that research needs to be done. The clinic is currently appealing for specialists to visit Sierra Leone to look into post-Ebola syndrome.
 
"It's too sad," Sowa said. "Just go out into the countryside and you'll see. People are really suffering."

Working Toward a solution
 
There are stories of people fighting back. A team called the "ebola soccer survivors" are using soccer in order to find solidarity with other survivors. Watch their amazing story, recently profiled by the NYTimes:
 click here.
 
 
Credits
Much of this meeting program was brought to you by articles from Aljazeera and Reuters.
 
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