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Wednesday, April 16, 2014
- In the war-devastated South Sudan, a region with a population of over eight million people, Yeneneh Mulugeta is the only permanent ophthalmologist.
Dozens visit the eye clinic in the semi-autonomous region’s capital every day from across the South trying to have their sight restored, mostly old and silent, waiting their turn with a helper. The Ethiopian doctor has performed hundreds of cataract operations – removing the protein build-up that covers the eye – that miraculously bring back sight.
Reversible cataract is probably responsible for half the cases of blindness in the South, but Mulugeta and government officials in the health sector know there are thousands who have no access to treatment. They also know – although no comprehensive studies have been done – that many thousands are at risk from two of the world’s leading blindness-causing infectious diseases; river-blindness and trachoma.
“South Sudan looks to be the worst. Maybe two percent of the population is blind,” Mulugeta, who works with the Christian Blind Mission, said. This estimate is an extrapolation of numbers from neighbouring Ethiopia where 1.6 percent of the population is visually impaired but where there are far more public health services and infrastructure.
The Director of Eye Health at South Sudan’s health ministry, Ali Yousif Ngor, oversees the South Sudan part of an Africa-wide attempt to combat river blindness, also known as onchocerciasis (O.V). It is a disease spread by the black fly that carries larval forms of a worm parasite. These worms grow and breed, releasing thousands of larvae that move all over the body causing intense itching and blindness.
River blindness is prevented by widely dosing communities in affected areas with a drug called ivermectin. For the last two decades ivermectin has been provided free of charge by a U.S. pharmaceutical company in an attempt to eradicate the disease in endemic countries, mostly in Africa.
Part of the problem is that officials like Ngor simply do not know how widespread the disease is. Ngor said that the government does not even know if O.V is more or less common than trachoma, another major cause of blindness in the South. Trachoma occurs when untreated, repeated infections of the eye by bacteria eventually causes scarring so extensive the eyelid partially turns in on itself. The lashes scratch the cornea causing intense pain and often first reversible and then irreversible blindness.
Ngor described one small village where the arrival of a mobile ophthalmologic team prompted 400 blind or partially sighted people to turn up in the hope of treatment. “But it was too late for many of them,” he said.
Even within Juba city, lack of knowledge about diseases mean patients often do not go to the clinic early enough to save their sight. But outside the city the situation is far worse; there are no ophthalmologists or even an optometrist to fix disabling short or long sight with a pair of spectacles. Glasses were desperately rare even in the capital until last year. During the 22 years of Sudan’s bloody north-south war the only way to get glasses was to travel to Khartoum, North Sudan, or to the neighbouring countries of Kenya or Uganda.
Levi Sunday is thin, smartly dressed and blind. As his stick tip-taps the ground uneven with tree roots and rain gullies, he moves faster than the average Juba citizen in the hot and small town.
He is Chair of the Equatorian Union of the Blind that has some 800 members. It is a comparatively large organisation by the South’s standards but Sunday said they are finding it hard to draw attention to the problems the blind and partially-sighted experience, including issues of poverty and stigmatisation.
“The union was formed in 1984 … to combat begging, train the blind in handcrafts like basket weaving so they can depend on themselves,” Sunday explained. Classes in other income-generating skills have also been put in place but in reality, Sunday said, many blind are begging.
The union also organises classes to help the blind learn to use a stick and has close connections to the blind school where Braille is taught. “Many of the blind are not educated because of the poor quality of education in the South, there is nothing for the blind – except here in Juba. Now we have Braille machines here so they can type their notes in Braille and read books in it,” Levi said.
Five former students are now enrolled at Juba University, a cause of some pride. The union is also responsible for dozens of marriages between Juba’s blind. Macho South Sudanese society is still too narrow-minded for blind men to easily marry girls with sight, Sunday said.
“There is great ignorance in the south. People do not consider the blind as human. They are seen as powerless. Sometimes they are not helped, even with food. The blind in the south can die because of a lack of support. Blind children are undermined,” Sunday said.
His chairmanship got off to a rough start earlier this year. The union spilt into those supporting Sunday and those supporting his predecessor (who established the union in 1984) over differences over the constitution and personal politics. Feelings ran so high a policeman was put outside the run down union building after someone punctured the wheels of the body’s ancient Suzuki (they have a volunteer part-time sighted driver).
Too much politics everywhere seems like a curse of the South. Even in peacetime life in the region is fraught for many. Southerners are still holding their breath for a 2011 referendum promised under the peace deal that will give them a long-awaited chance to vote for separation from north Sudan. But many worry that tense North-South Sudan relations will worsen in the run up to elections next year and the referendum vote. In the meantime tribal violence has intensified this year, with hundreds killed including women and children.
With these problems perhaps it is not surprising that the blind are side-lined. The four-year-old government has not yet met the poor standards of garrison times when the blind were provided free transport and educational support. Experienced blind teachers were recently threatened with dismissal, because they were deemed unfit to teach, a deep blow to the union’s confidence, although the threat was later retracted.
“Since the peace, I myself have not seen a change in the lives of the blind. People now (in power) are not cooperating with blind people… before the peace when Juba was under Khartoum at least we had free transport cards. Now there is nothing like that,” Sunday said.
For experts in the sector the problem is extremely worrying. The Carter Centre, an American non-profit that has trained surgeons to do trachoma surgery in rural areas, says that in Sudan some 5 million people could be at risk from river blindness.
“Early blindness is early mortality in South Sudan,” Dante Vasquez from the Carter Centre said. The blind tend to have poorer nutrition and are isolated so they die younger.
The Carter Centre has performed well over 4,000 trachoma surgeries, a procedure which involves cutting and re-sewing the eyelid in a way that turns the eyelashes back outwards, in the South and has treated hundreds of thousands of earlier-stage cases with antibiotics. Though Vasquez believes the true scope of the disease is unknown; and the centre could be just scratching the surface. In Ayod county the Carter Centre found 15 percent of the population affected, and three percent of children. Trachoma infection in more than one percent of the population is usually considered a serious health risk.
Children with the disease are stigmatised, not least by the pain that renders them unable to perform everyday duties. They also become a burden; as Ngor pointed out. He explained that every blind person also needs another to help them, thus creating a drain on family resources.
Children blinded by the disease are especially worrying as loss of sight follows repeated infection, normally only occurring by the time they are adults. “We’re seeing it in younger and younger populations. This is an indicator of how acute the problem is,” Vasquez said.