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Trachoma: The neglected tropical disease with a devastating impact – Rahila’s story

By Abdullahi Tsanni, science writer

On the road to Magamar Jibiya, a town in northern Nigeria’s Katsina state, you soon notice life transition from the bustling Katsina city to the quiet, slow pace of a rural setting on the outskirts. Homes made of mud, and vast agricultural fields of corn and millets, gradually replaced high-rise buildings and busy roads with honking cars and revving motorbikes.

One week before my visit, gunmen came firing sporadically into the air, the tell-tale warning of impending abduction of the town’s residents. A team from the Nigerian Army and local vigilante—a voluntary group of young men organized to help fight crime—repelled the attack. But, despite offering a sense of security, the presence of the Army and vigilante made the atmosphere of the town feel insecure and quieter than usual, my travel guide told me. The people here are mainly smallholder farmers, so the insecurity has affected farming activities too.

Among the temporary quietened population of Magamar Jibiya was twenty-two-year-old Rahila, who was born nearsighted. Rahila’s eyesight deteriorated about two years after her birth, later completely losing her sight to trachoma at a young age. Trachoma is a bacterial infection that causes severe scarring on the inside of the eyelids, forcing them to turn inwards. As a result, the eyelashes rub against the eyeball resulting in constant pain and light intolerance. Speaking to me in Hausa, a popular language spoken in most parts of northern Nigeria, she said: “I was born with partial blindness and poor vision. I was infected by trachoma when I was growing up.”

“I later turned blind completely and lost my sight.”

Speaking to Rahila’s father, Abubakar Suleiman, he told me: “We tried as much as we could to get her sight back, but all efforts failed.”

“I feel unhappy [about her blindness], but I believe everything is from God—whether good or bad—so I submit to Allah’s will wholeheartedly.”​

A Public Health Concern

Trachoma is a leading preventable infectious cause of blindness or visual impairment globally, affecting 1.9 million people, and is a major public health concern. An infectious disease caused by the bacterium, Chlamydia trachomatis, trachoma spreads through direct and indirect contact with the discharge from an infected person’s hands, clothes, nose, and eyes, or through infected flies. According to the World Health Organisation, globally, 13.9 million people are at risk of 2 blindness from trachoma, belonging to a group of 20 debilitating diseases collectively known as Neglected Tropical Diseases (NTDs), which affect about 1.7 billion people worldwide.

NTDs are present in 149 countries, mainly in Africa, Asia, and the Americas, where millions of people live in poverty without adequate sanitation. This group of diseases — Trachoma, Leishmaniasis (black fever), Leprosy, Onchocerciasis (river blindness), amongst others — disable, disfigure, and is associated with high mortality in children and adults. Moreover, they trap communities in endless cycles of poverty and cost developing economies billions of dollars annually.

Nigeria is endemic for NTDs. It carries the highest- burden on the African continent — more than 100 million Nigerians are reportedly at risk of contracting at least one of the 20 NTDs, particularly among those in areas without adequate water, sanitation, and hygiene (WASH) facilities.

Trachoma does not have a gender preference, but…

Although NTDs, do not discriminate by gender, these infections disproportionately affect women and girls. This can be explained by socio-cultural factors that expose women and girls to domestic activities, increasing their risk of contracting NTDs. For example, household chores in unsanitary steam water increase the risk of contracting schistosomiasis, and providing care to an infected individual increases the risk of exposure to trachoma and blindness. It has been reported that women account for up to 80% of the burden of blindness caused by trachoma. In general, the impact of NTDs and trachoma extends beyond the affected women and girls. This is because women and girls are often the primary caregivers to an infected family member. They are forced to give up their job or drop out of school to take care of the sick, impacting their current and future development. In addition, poor knowledge of preventive measures only increases the risk of spread.

Aliyu Mohammed is Nigeria’s head of the NTDs program at Helen Keller International, a nonprofit organization dedicated to combating blindness and eliminating diseases worldwide. Mohammed says that trachoma is endemic in many parts of Nigeria, but the organization is working in communities to help eliminate these debilitating diseases. For example, they have successfully established 12 mass drug administration programmes across 12 local government areas in Katsina, distributing preventive treatments in communities. However, Mohammed noted 3 a need for more education among the public on handwashing and hygiene, which he says are crucial to preventing blindness caused by trachoma.

Undeterred to Learn

Talking of Rahila, Mohammed said: “The story of Rahila Abubakar really touched me. Most of us do not appreciate the beauty of sight until we lose it. Imagine closing your eyes and trying to find your way around, even in your own home. How would you feel? This is what Rahila is going through daily throughout her life.”

Living with blindness caused by trachoma affects Rahila’s life. But it did not deter her from attending school, completing her basic primary and secondary education at the School for The Blind in Katsina, a special school for people living with disabilities. She hopes to attend the university soon to advance her education.

Rahila’s talent and ambition are clear: She wants to become a journalist. “No one would respect you if you are uneducated. Education is the light that shines in our life. If you have education, you would not be liable to your parents, let alone the community,”​ she says.

You can watch the full documentary about Rahila here, supported by Speak Up Africa. Abdullahi Tsanni is a science writer in Abuja, Nigeria.

Trachoma is a preventable infectious cause of blindness. Through its 2020 resolution, the World Health Organization established the NTD 2021–2030 road map for the global elimination of trachoma by 2030. The SAFE elimination strategy consists of:

  • Surgery to treat the blinding stage (trachomatous trichiasis);
  • Antibiotics to clear infection, particularly mass drug administration of the antibiotic azithromycin, which is donated by the manufacturer to elimination programmes, through the International Trachoma Initiative;
  • Facial cleanliness; and
  • Environmental improvement, particularly improving access to water and sanitation.

Achieving the 2030 global strategy will require awareness and education of healthcare professionals and patients.

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