Simon Shauabi never thought mere fly bites could rob him of his sight, but he has now been blind for almost three decades.
Shauabi, who lives in the small community of Kudaru in Kaduna state, northern Nigeria, relies on his grandchildren to provide him with food and with water from the well, but he has never seen what any of them look like.
- Simon Shauabi and his seven-year-old granddaughter Dorcas
Shauabi has onchocerciasis, also known as river blindness. When he first noticed something was wrong, he had no idea what was causing the problem.
“I used to be a farmer – my livelihood was based around working in the fields next to the river,” Shauabi says. “I noticed I was starting to get a lot of bites on my legs and particularly around my feet, which marked the beginning of the problems that I started having. I’ve been blind now for almost 30 years.”
Shauabi’s symptoms began with a rash. “The skin on my legs started to get red raw and the itching was so bad that sometimes I would scratch them until they bled,” he says.
“I never imagined that this would lead to something much worse. The skin problems started first but gradually my sight got worse and worse until eventually I was completely blind.”
River blindness is transmitted to humans by the bites of black flies, which dwell near fast-flowing rivers. Infection leads to painful skin problems, including severe itching, and can also cause visual impairment and irreversible blindness.
Many communities, such as Kudaru, rely heavily on water from local rivers for drinking, washing and agriculture, which increases the spread of the disease.
- Men seen from a bridge over the Kaduna river, on the border between Nigeria’s Kaduna and Kano states
Shauabi’s situation is not a one-off: 20 years ago, around 50% of the people living in Kudaru had river blindness. The disease became so prevalent that the whole community relocated to an area further away from the river and the threat of the black flies.
River blindness is part of a group of debilitating infections known as neglected tropical diseases (NTDs), which affect around one in five people worldwide. They are known as “neglected” because, for the most part, these diseases are not prioritised by governments, do not attract major pharmaceutical funding and fail to spur global awareness movements such as those tackling the Zika and Ebola viruses. Many NTDs are preventable and treatable, yet more than 1 billion people have them.
In Kudaru today, thanks to a collaboration between partners around the globe, there are no new cases. Younger generations in this rural farming community are protected from NTDs thanks to the mass administration of preventive drugs.
- Community-directed distributors Danladi Ishaku and Baraka Ango administer preventive treatment
Simon’s Shauabi’s granddaughter, Dorcas, seven, is one example of this. Standing next to her grandfather, she receives the billionth treatment for NTDs delivered by the international NGO Sightsavers and its partners.
The story of Shauabi and Dorcas demonstrates the generational difference between them and the strides made by the global health community towards eliminating NTDs for good.
- Dorcas celebrates after receiving the billionth NTD treatment delivered by Sightsavers and its partners
Nigeria has 25% of Africa’s NTD cases. But all over the world, river blindness has robbed parents and grandparents of the chance to see their families. People infected by river blindness and other NTDs often find themselves facing lifelong physical impairment; they may be unable to go to school or work and become trapped in a cycle of poverty and social isolation.
- Dorcas attending school with her friends
Today, Dorcas and other children like her who receive preventive treatment are able to go to school and live their lives without the constant threat of NTDs. “When I grow up, I’d like to be a doctor so I can help my family,” Dorcas says. “I hope that one day, all children will be free from these diseases.”
- Children in Kudaru community
The billionth treatment was given to Dorcas as part of the United programme, funded by UK aid and supported by a network of organisations. She received a combined preventive treatment for river blindness, lymphatic filariasis and intestinal worms. The treatment was administered by Baraka Ango, one of thousands of voluntary community-directed distributors (CDDs) across the developing world who are trained to provide treatment and education to their local communities.
- Hauwa Ihiya, a community-directed distributor supervisor and district health education worker, delivers CDD refresher training. Right: a CDD sits with a child during a training session at Kaduna health centre
- CDD training sessions at Kaduna health centre
Shauabi says: “My people have a saying – God does not take everything away from you. If he takes one thing, he leaves another. He has taken my sight, but he has left me with a family who take care of me.”
Despite significant progress, 120 million people globally are still at risk of onchocerciasis and the condition is classed as endemic in 27 countries. Considerable challenges are still to be faced. Alongside around 300 partners in 29 countries, Sightsavers treats NTDs via drugs, surgery and hygiene behavioural change programmes.
- Participants in a CDD training session at Kaduna health centre
Further work is required to strengthen healthcare systems and ensure support is given to the people who need it. The problems at the root of NTDs are the sorts of things many of us take for granted, such as access to clean water, sanitation facilities and education.
“I have many hopes for my granddaughter Dorcas, but the main one is that she is able to grow up without ending up blind like me,” Shauabi says.
“I thank God for my life every day and am grateful that I’m still alive despite the fact that I am blind. But my wish is that river blindness will not befall any other person, because to be blind when it could have been avoided is a terrible experience.”
