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Chai Brady speaks to Sightsavers about the devastating diseases and blindness they combat
Easily treated diseases that are now quickly tackled in the Western world with readily available medicines are still a scourge in developing countries, with blindness being one of the “devastating” outcomes.
Charlie Lamson, CEO of Sightsavers, told The Irish Catholic that it wasn’t so long ago that countries like Ireland were struggling with diseases, such as Trachoma, easily treatable at its early stage with antibiotics.
Returning from Senegal recently, Mr Lamson saw first-hand the effects of Trachoma, and how the “horrific” disease develops. Working in over 30 countries the charity assist communities, governments and train local staff who will stay in the country helping those in need.
“The way we work is a collaborative approach, the country office works with local partners and then works with the ministry of health, so a lot of what we’re doing is based on working directly with the countries,” Mr Lamson says.
“We’re not just flying in, doing all this great stuff, and then flying out again. It’s very much about working with government ministries to create genuine change in the way that they approach the challenges they have.”
In 2018 the charity carried out more than 16 million eye examinations across the countries in which they work, and distributed more than 113 million treatments to prevent and treat debilitating diseases.
Sightsavers first programmes began in the 1950s, starting in Kenya, Uganda, Ghana, Malawi, Zimbabwe and Nigeria, with several other African countries following in the next two decades.
In the 1960s and 70s this was expanded into Asia with their first projects in India, Pakistan and Bangladesh. The charity also continued to extend their work across Africa. More recently, their work in Yemen began in 2018.
Their work in Sri Lanka came to an end in 2016, which was the first time the charity finished working in a country as they were satisfied that they eye care services they set up would continue without them.
Mentioning Francis Ford Coppola’s film, The Godfather Part II, when fictional character Vito Corleone’s eyes are checked for Trachoma before he enters New York from Sicily, Mr Lamson says this is an example of how the Western world was once challenged with the disease.
“All of the support that’s provided to older people through a wealthy society, a modern economy, if you were to remove all of that and then find yourself in a very poor economy without any of those structures in place – it’s very devastating.”
Trachoma is the world’s leading infectious cause of blindness, and is part of a group of conditions known as neglected tropical diseases (NTDs). Much like conjunctivitis it starts as a bacterial infection, but if it is not treated it can become unbearable.
Over time it causes scarring to the eyelid that pulls the eyelashes inward, so with every blink they scrape against the eye. This advanced form is called trichiasis and is so intensely painful that people afflicted resort to pulling out their eyelashes due to the agony of blinking.
The disease thrives where there are water shortages, poor sanitation and infestations of flies. It’s caused by repeated infection with bacteria known as chamydia trachomatis, and it spreads through contact with infected flies and via hands, clothes or bedding that have been in contact with an infected person.
Mr Lamson says they are working on a campaign called ‘The End is in Sight’, which endeavours to eliminate the disease by 2025. Currently there are still 44 countries that count the disease as a public health problem.
“We train ophthalmologists, ophthalmic surgeons, ophthalmic nurses, we’re working with ministries of health around things like budgeting and long term planning, all of these,” he says.
The result of this will be a trained medical professional from the country who will stay there and continue to work with people. In addition to training, they provide expertise and medical equipment, with Mr Lamson saying the model is based on true sustainable development.
Trachoma is not the only disease the charity is combatting. River blindness is a parasitic infection spread by flies near fast flowing rivers and can cause severe irritation, itching and even blindness if the infection is not treated.
Mr Lamson says: “We’re not working directly with river blindness in Senegal, although we do see it for example in Ghana. One of my colleagues was down there and has unbelievable stories.
“You see a whole village… river blindness can affect up to 70% of a community when it really takes hold, and 40 years ago that would be the case. She visited a community in Ghana and was interviewing seniors within the community. She interviewed about five or six people, all of them were blind as a result of river blindness.”
The community his colleague visited had to abandon their former village to move further away from the river, due to the prevalence of river blindness.
“The community was dying, the young people all moving away, you were left with a lot of visually impaired seniors in the community so it was devastating, to see the pictures and hear her talk about it,” he says.
“River blindness is interesting because it can take years for it to manifest before it then starts to manifest in the eye and cause vision loss.”
When someone is bitten by the flies, larvae invade the body and develop into worms that can live for 15 years. Female worms produce thousands of microscopic larvae each day known as ‘microfilariae’ which spread through the body and can be passed on to others. When the microfilariae die, they cause a reaction leading to immense irritation, inflammation and itching. If the larvae travel to the eyes, it can cause irreversible sight loss.
As well as pain, blindness and the associated stigma, river blindness forces people to move away from fertile river valleys where the disease is prevalent. As a result, they can struggle to find suitable areas to farm or grow crops, pushing families and communities into poverty.
However, treatment is relatively cheap, with Mr Lamson saying €50 can protect 1,000 people from river blindness. The medication comes in the form of tablets and a simple method used to gauge the height of a person informs what dose someone should be given.
Almost all of us…are going to be disabled, and the majority are going to face that disability when we get to that age in our lives, when we’re older”
The instrument is called a dose pole, which is tall and colourful, with each colour having dots representing how many tablets should be given depending on a person’s height.
For example if a person is 172cm, the dose pole would be placed beside them and would show they need three tablets. Due to some community members being wary of the medicines, Mr Lamson explains, having community directed distributors (CDDs) is a huge benefit.
People from within the community are each given a dose pole, which is easy to use regardless of literacy levels, and they can be trained and subsequently trusted to treat other members of the community properly.
The added benefit is the distributors are nominated by their local community and are therefore ideally placed to deliver the medication as they understand the community’s dynamics and customs, enabling Sightsavers to deliver aid to those who need help the most and ensure that people in the most poor or remote areas are treated.
One of the most “vital” parts of the charity’s ability to continue with these, and other life-changing initiatives is through their legacy donations.
“Legacy donations are critical, it’s a huge part of our work. Oftentimes a legacy gift…we can use in the areas that we need it most, which is really important,” says Mr Lamson.
“It’s such a personal form of support for us. We recently have a number of legacy gifts come through and we’ve ended up getting some absolutely incredible letters from the family who are talking about the person who had passed away and how this was important for them, in that they had wanted to do something and they had chosen us because they had known something about us. Or they’d been giving to us for years as a regular donor, and they’d receive our correspondence.
“A lot of what we’re trying to do is tell people about what it is that we’re doing. What’s wonderful to me is that a lot of people feel moved by that enough and trusting enough of the work that we’re doing.”
Reflecting on the disparity of opportunity and affluence between the Western world and developing countries such as the ones the charity works with in West Africa, Mr Lamson says since he started with Sightsavers two years ago it really struck him how eye glasses in Senegal are not common – the percentage of people who have them is extremely low and in rural communities it’s almost zero.
“I do a fair number of presentations and things like that, and if I’m sitting with an audience, and I were to ask everyone to take off their glasses, half the audience wouldn’t be able to see the presentation,” he said.
“You think about the impact of eye glasses, how we take them so much for granted, and if you were suddenly to say none of us could have eye glasses the impact on our lives at a personal level, on the community where we live, on the whole functioning of our society. If you were to remove the capacity of people who need eye glasses to get through the day – that’s a big one.”
“Almost all of us at some point in our lives are going to be disabled, and the majority are going to face that disability when we get to that age in our lives, when we’re older.”
Sightsavers also do large amounts of work to promote inclusive societies for the disabled, whether in education, employment, healthcare or politics.
In Senegal the charity’s inclusive education pilot project was launched in three schools in Dakar in 2014. Part of this was to work with the General Directorate of Social Action to provide scholarships to blind students, they also give financial assistance to parents, translate textbooks to braille, adapt school facilities, certify children as visually impaired and provide eye care through the Senegal eye care programme, including low vision aids, braille and referrals for treatment such as cataract surgery, to name a few.
“If you’re talking about an underdeveloped economy like Senegal, where you have 54% illiteracy and then you throw on top of that those who are disabled, or have a vision impairment then you really are at the end of the line there, so we’re trying to work with those guys,” Mr Lamson added.
While Sightsavers work in a variety of countries across the world, at times some communities and societies are in greater need of immediate action to mitigate harm. Legacy donations, Mr Lamson explains, help the charity to pour resources and initiate positive change quickly; protecting eyes against blindness and disease and combatting exclusion because of disability.