Newly independent South Sudan has some of the highest blindness rates in the world. Endemic diseases that have been stamped out in other post-conflict countries are rife, and the only fully functioning eye centre is in the capital, Juba.
“There is only one ophthalmologist in South Sudan and that’s me,” says Wani Mena, who is also the Ministry of Health’s representative for eye care and head of the country’s main hospital.
The World Health Organization (WHO) recommends one ophthalmologist for every 400,000 people, while South Sudan has one for more than nine million people.
“This is the only centre in South Sudan. All the 10 states have to send people here for treatment or surgery, as they are not well funded and they are run by medical assistants or clinical officers,” says Paul Loke, a clinical assistant working for Christian Blind Mission (CBM), which set up the eye unit in 2011.
Taking time out of his busy schedule to visit the only fully functioning eye centre in Juba Teaching Hospital, Mena says up to quarter of a million people are blind.
“There’s a very high prevalence in South Sudan. In fact, when we compare with prevalence in East Africa, South Sudan has the highest… about 1.5-3 percent. Most of the countries in East Africa have a prevalence of blindness of less than 1 percent,” he said.
“[Between] 150,000 and 250,000 people who are blind is a tremendous number….because for every blind person, there are five other members of a family that are suffering,” he said.
In a country with some of the worst health statistics in the world, services for the blind are virtually non-existent.
A few small aid agencies and the hospital provide outreach and occasional surgery across a vast nation lacking basic infrastructure and with only a few hundred kilometres of tarmac roads.
The Equatoria State Union of the Visually Impaired (ESUVI) is based in Mundri. “We are based in Central Equatoria state only, the other states we don’t move there because of a lack of roads,” says ESUVI’s treasurer Elizeyo Males.
Mundri also boasts a school for the blind, but “in other states, services for the blind do not exist”, he says. The association has 2,000 members but another 3,000 frequent the centre.
An extended disability
Margorete Kema says that where she lives in Maridi, Western Equatoria state, many children do not attend school as they cannot see.
“There are a lot of blind children, and there are no facilities, which is why I came here,” she says, waiting for cataract surgery.
“There is nothing to do in Maridi, most of the people are cultivating and depend on their produce, and it is up to the parents to look after people,” she says.
Adults who struggle to see have a harder time, as often there is nobody to care of them.
“They will search for anyone who can help them, but if there is nobody they can stay like that, and sometimes they go blind. This is why I have sought treatment before I go blind, to help my family [and a sister who is already blind],” Kema says.
Mena says that in South Sudan, even people “who can see very well, are already struggling – they are struggling daily to find food, to find jobs and there are security problems”.
Many keep quiet as they feel they are a burden, especially the elderly.
“That is why some of them accept the blindness and they never seek care. Blind people feel isolated… there is a lot of depression, and now we are starting to see evidence that blind people die much earlier than those that are sighted.”
Endemic and preventable blindness
Cataracts are the primary cause of preventable blindness in South Sudan, and Onchocerciasis (river blindness) the second.
While 16 African countries are at elimination stage, South Sudan and five other post-conflict countries have yet to control the disease. It is gradually stamped out by whole communities taking medication to stop larvae from an adult worm, which is transmitted by a black fly bite, from hatching under the skin and eventually attacking the retina.
Mena says South Sudan is seeing fewer cases of malnutrition or measles-related blindness, but the lack of services during decades of war has left a legacy of blindness that will take years to address.
River blindness has become a major problem, as communities could not be reached during the war to take medicines simultaneously every 10-15 years – the life cycle of the adult worm.
“I could say that out of 10 states now, it is in about six. Before it was just known in about three states,” Mena says.
The disease is still endemic in Kema’s state and causes 30 percent of the nation’s blindness.
Trachoma, caused by cramped and poor living conditions and a lack of clean water, is the other secondary cause of blindness.
Sightsavers charity says the area of Upper Nile state where it works has the highest trachoma prevalence rates in the world, and only 3.3 percent of the nation has access to clean water.
With hundreds of thousands of returnees flooding back, the country needs at least 22 ophthalmologists and hundreds more secondary eye-care specialists.
South Sudan plans to reduce blindness to 0.75 percent in 10 years, but to do so it needs enormous help with training, infrastructure and equipment.
“Our main challenge is finding doctors to be trained – we don’t have a large base from which we can recruit,” Mena says.
Two other eye centres in Malakal and Wau were destroyed during the war or fell to ruin and there was no training for eye-care workers during this time.
Those who were skilled migrated and although many have returned, they are mostly retired or too old to practise.
To try to solve the human resource problem in a country with a 16 percent literacy rate, CBM ophthalmologist Yeneneh Mulugeta has been providing training for four years and is now trying to secure scholarships abroad for budding eye doctors.
Before the clinic was built, he trained people in his living room; three batches of ophthalmic clinical officers and one batch of cataract surgeons have graduated.
“We need to establish at least one eye centre in each of the 10 states… the blinding diseases here are very rampant.”
In Africa’s fastest-growing capital, one of a handful of opticians to have set up in the last year is next to the hospital. But the owner admits only government workers can afford its glasses.
“Refractive error is said to be the leading cause of preventative blindness,” says Mulugeta.
The hospital is trying to open a spectacles workshop to produce good and cheap glasses for all South Sudan.
Treating cataracts is a simple operation, but for Kema it is a miracle.
“I am very happy. I prayed to God, and now my eyes are open,” she says with a big smile the day after her surgery.
“My life will change. What I couldn’t do before, I will do now – like going to dig, and fetching water, cleaning, going to farm. These were all problems before. But now, I can perform all my duties,” she says.