A Mother's Fight Against a Blinding Disease in Sub-Saharan Africa:
Fighting NTDS in 2023
©CBM
Read Nanye's story about music, tradition, and the fight against Trachoma in Ethiopia.
The story of Nanye illustrates the complex interplay of tradition, livelihood, health and development in a rapidly changing world. As Azmari, a musician and singer of folkloric song stories, Nanye plays a traditional instrument called the Masinko: a Cello-like instrument with only one string played with a bow.
Together with her ex-husband and their children, she travelled from village to village, often covering distances of up to 64 km, to sing at weddings. Sometimes they stayed away from home for up to three months. During harvest season, they sang motivational songs for the people who brought in their harvest.
The Masinko and music were more than just tradition and their heritage; they were their livelihood. Nanye and her husband did not own farmland. Music was their only income.
It was during this time that Nanye began to feel a stabbing pain with every blink of her eyes. As if that wasn’t bad enough, she also began to lose her eyesight. "My eyes itched and started to water. At first, I thought it was just a simple thing, but it got worse and became severe. When I was sick, I would get severe headaches and my vision would get cloudy. I would spend two to three days in bed. It was very bad," Nanye explains her condition.
She had contracted a Neglected Tropical Disease (NTD) called Trachoma. “I thought this eye disease was genetic because most of my relatives were affected by it,” Nanye explains. She was wrong.
The global burden of NTDs
Trachoma is a highly contagious eye disease caused by infection with the bacterium Chlamydia trachomatis. The bacterium is spread by human contact and eye-seeking flies. It thrives in poor sanitation and hygiene conditions with limited access to clean water. Repeated infection damages the eyelids, causing the eyelashes to turn inwards and rub against the cornea. If left untreated, this extremely painful and disabling disease leads to irreversible loss of vision and, in advanced stages, blindness.
However, loss of vision can be prevented by taking medication in time. Once the stage called Trachomatous Trichiasis (TT) is reached, where the eyelashes scrape over the cornea, a simple eyelid surgery can help and correct the position of the eyelashes. If people get help in time.
Approximately 125 million people worldwide are currently at risk of going blind from Trachoma. This makes the disease the leading cause of preventable blindness worldwide.
The disease caused Naye excruciating pain and as she could no longer see clearly, she was unable to perform. This threatened her livelihood as a musician and the well-being of her family.
"After some time, my eyelashes started poking into my eyes and it became so painful that I had to buy tweezers and pull them out. I did that myself because I was afraid I might spread the infection to other people," Nanye explains.
Women like Nanye and young girls are often more prone to NTDs because they are the main caregivers in the family. They are also more involved with children, who spread the disease faster and further.
The lack of skilled health care providers limits effective disease control. In Africa, collaboration is needed between local communities, especially health workers and nurses, community leaders and health professionals. Raising health awareness and improving sanitation play an additional role in preventing the spread of infections.
Life After Music
©CBM
Nanye is now divorced from her husband and does not work. She has no means to support her family. Nanye gets up early, to fetch water, collect firewood and prepare breakfast: Peas with Injera (a sour, fermented, pancake-like flatbread with a slightly spongy texture, traditionally made from teff flour). After breakfast, she prepares coffee to share with her neighbours in a traditional ceremony where people come together and talk.
Transforming Despair into Hope
At one of these coffee ceremonies, Nanye was joined by social worker Yinges and TT surgeon Getacachew. The two have been trained by CBM to screen, diagnose and treat Trachoma in Ethiopia.
Getacachew diagnosed Nanye with Trachoma and recommended surgery before it was too late. He also diagnosed Nanye’s daughter Tigist with it. The good thing is that Tigist does not need surgery because her infection was detected early. She will be given medication.
“I was shocked when I came to know that my daughter is also affected like me. It really scares me. I am glad that the health workers came here in time,” says Nanye.
Nanye could not afford a much-needed TT surgery on her right eye. Fortunately, thanks to a campaign by CBM, she was able to have a free surgery in her village. She was advised to return in three months for a check-up and possible surgery on the other eye.
Dr Sheila West, a member of CBM's advisory board and professor of preventive ophthalmology at Johns Hopkins Medicine's Wilmer Eye Institute, emphasises that medical expertise, supported by dedicated community workers, is the cornerstone of Trachoma eradication.
In a larger context, Nanye's story highlights the need for community-based health models of awareness, diagnosis and treatment and the urgent need for increased investment in health infrastructure in Ethiopia and sub-Saharan Africa.