Victims spared by the deadly disease are reporting blindness and other unexpected post-Ebola health issues. Tommy Trenchard writes.
Kenema, Sierra Leone – Massah Kamara sat patiently with her brother Momoh, her haunted eyes focused somewhere in the middle distance beyond the walls of the post-Ebola clinic.
Three months earlier, doctors gave her the good news – after weeks of fighting the disease, she had finally beaten Ebola. She would live.
Back in her home neighbourhood of Nyandeyama, a quiet suburb of sandy streets and mango trees, she found out 22 members of her family were dead, including her parents. She had no money, so was unable to go back to her tailoring business, and many of her possessions had been burned by terrified neighbours.
Then, just when she thought things couldn’t get worse, she began to lose her eyesight.
“My eyes are dark,” she said sadly. “Even when the sun is shining, my eyes are dark.” Kamara said she was happy to have survived Ebola, but fear and misery were etched onto her face.
Kamara is one of 40 percent of Ebola survivors to have gone on to develop eye problems, according to a recent study carried out by the World Health Organisation and Kenema’s District Health Management Team. It has been more than a month since the district saw it’s last case of Ebola, and attention is turning to the plight of survivors.
The results of the survey, a copy of which was seen by Al Jazeera, outline a raft of physical, social and psychological problems the survivors are experiencing.
Seventy-nine percent, for example, now suffer from joint pain; 42 percent have problems sleeping, while more than one-third of those surveyed experienced peeling of the skin. Many others reported problems with their reproductive system.
“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.
“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 Al Jazeera spoke to, the horrifying experience of 38-year-old Zidane Konneh best exemplifies the problems they face – though with one bizarre twist.
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.
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.”
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.”
It could be recalled that since the beginning of the outbreak in Sierra Leone in late May 2014, several people have been evacuated. An increasing lack of hospital beds, medical equipment, and health care personnel makes treatment difficult.
On 24 August William Pooley, a British nurse, was evacuated from Sierra Leone. He was released on September 3, 2014. In October 2014 he announced he would return to Sierra Leone.
On 21 September 2014 Spain evacuated a Catholic priest who had contracted Ebola while working in Sierra Leone with Hospital Order of San Juan de Dios. He died on the 25th September in Madrid. On 6 October 2014 a nurse who treated the priest tested positive for Ebola. By 20 October 2014 the nurse seemed to have recovered after many days battling the disease in the hospital, with tests coming back negative.
A doctor from Senegal contracted Ebola while working in Sierra Leone for the WHO, and was evacuated to Germany at the end of August 2014. By 4 October 2014, it was announced he has recovered and returned to Senegal.
In late September, a doctor working for an International Aid organization in Sierra Leone, was evacuated to Switzerland after potentially being exposed. He later tested negative for the disease.
In late September 2014, an American doctor working in Sierra Leone was evacuated to Maryland, USA, after being exposed to Ebola. “Just because someone is exposed to the deadly virus, it doesn’t necessarily mean they are infected”, said Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases at the NIH. He was evacuated after a needle sticking accident and even developed a fever, but he was determined not to have Ebola and was released the first week in October 2014. After being discharged he remained at home under medical observation, checking his temperature twice a day for 21 days.
In early October, a Ugandan doctor who contracted Ebola while working in Sierra Leone was evacuated for treatment to Frankfurt, Germany. The doctor was working at Lakaa Hospital and flown out from Lungi Airport.
On 6 October 2014, a female Norwegian MSF worker tested positive for Ebola virus and was subsequently evacuated to Norway. Norwegian authorities reported that they had been granted a dose of the experimental biopharmaceutical drug ZMAb, a variant of ZMapp. ZMapp has previously been used on 3 Liberian health workers, of which 2 survived. It was also used on 4 evacuated westerners, of which 3 survived.
A U.N. employee was evacuated to France in early November 2014 after contracting Ebola.
On 12 November 2014 Dr Martin Salia, a permanent resident of the United States, tested positive for Ebola while working as a specialist surgeon at the Connaught Hospital in Freetown. He is the sixth Sierra Leone doctor to have contracted Ebola virus disease. Initially he preferred to be treated at the Hastings Holding Centre by Sierra Leonean medical personnel, however on 15 November 2014 he was evacuated to the Nebraska Medical Center where his condition was reported as “still extremely critical” on Sunday 16 November. On Monday, 16 November the hospital released a statement that he “passed away as a result of the advanced symptoms of the disease.”
On 18 November a Cuban doctor, Felix Baez, tested positive for Ebola and was due to be sent to Geneva for treatment. He later recovered. Baez was one of 165 Cuban doctors and nurses in Sierra Leone helping treat Ebola patients. There are a further 53 Cubans in Liberia and 38 in Guinea, making this the largest single country medical team mobilized during the outbreak.