Since 1986, when Rosemary Shenda Masanja first felt her eyelashes painfully scraping her eyes, she suffered in silence and pushed through her pain out of necessity. Masanja recalls first noticing the problem as a young girl living in Dodoma, Tanzania.
"One time, I was so sick that my eyes were tearing up. I started feeling the eyelashes pricking the eyes every time," she said. Despite the pain, she continued working. "My living conditions kind of forced me not to think about how I was feeling, but to push through," Masanja added.
For decades, Masanja suffered from trachoma, a neglected tropical eye disease caused by the bacterium Chlamydia trachomatis. Repeated infections led to trachomatous trichiasis, where the eyelids turn inward and the eyelashes scrape the eye surface, causing pain and damage that can lead to blindness if untreated. Trachoma was common in Tanzania's Dodoma region in the 1980s, where Masanja first encountered it, and many in her community bore the same suffering.
The World Health Organization (WHO) classifies trachoma into five stages: the active infection stage Trachomatous inflammation or follicular - (TF), intensive inflammation (TI), scarring of the eyelid (TS), inward turning of the eyelid known as trachomatous trichiasis (TT), and corneal opacity (CO), which causes vision distortion and blindness. Globally, about 103 million people live in trachoma-endemic areas and are at risk of blindness.
She lived with tearing, itching, and fear of losing her sight until, finally, with support from donor-backed health programs, she underwent surgery last year. "I didn't even resist the surgery," she said, recalling the relief when she learned her condition could be treated. "I was very happy when I was told that my eyes could be treated. Because if you are told you have a condition and then it is treatable, you become happy." The surgery gave her hope and restored her vision.
Now, Masanja urges others, especially women with trachoma, to seek treatment without fear. "I would like to tell them that they shouldn't be afraid," she said. "Even when we went for surgery, many people were very afraid - they thought their eyes would be scratched or something, so they didn't want to get it. But I want them not to be afraid, because their eyes can be treated."
Buoyed by her own recovery, Masanja turned her attention to her 12-year-old grandson, Tito Ibrahim. From birth, she had noticed his unusually large scrotum - a sign of hydrocele, a swelling caused either by a congenital condition or by lymphatic filariasis (LF), another neglected tropical disease common in Tanzania. Doctors advised waiting until he was five for surgery, but financial barriers delayed treatment, and the swelling forced Ibrahim to miss school and stop playing his favorite games.
When a lymphatic filariasis mass drug administration (MDA) team arrived in her village, Masanja sought help for Ibrahim. Though the team focused on preventive treatment for LF rather than surgery, and despite being told "no" several times, she persisted. Masanja visited clinics, spoke with officials, and advocated for her grandson's care. In 2023, Ibrahim finally received surgery during a free medical campaign.
Dr. Faraja Lyamuya, an epidemiologist and LF focal person, explained that Ibrahim was born with a congenital hydrocele and an inguinal hernia. "He was operated on during a hydrocelectomy camp at Bagamoyo District Hospital. He did not qualify under the usual surgical criteria, but because his grandmother kept returning, the surgeons eventually decided to help him," she said. Surgery is often delayed for children under five due to anesthetic risks, but Masanja's persistence ensured Ibrahim was treated.
The operation gave Ibrahim relief and a chance to fully embrace his childhood and education. "I was very scared," Ibrahim said about the day of his surgery, but his grandmother helped him through it.
For years, he had stopped playing football because of the pain but resumed after surgery. Now 14, he dreams of joining a local village team and eventually bigger clubs. He supports Simba and Yanga, two major football clubs in Dar es Salaam, and enjoys dancing to Bongo Flava, a popular Tanzanian music genre. "If anybody feels what I was feeling, they should go to the hospital," he said.
Hydrocele is common in areas affected by neglected tropical diseases like lymphatic filariasis and schistosomiasis. LF is caused by parasitic worms spread by mosquitoes and can cause swelling of limbs or the scrotum, resulting in pain, social stigma, and disability if untreated. Tanzania is making progress toward eliminating LF, with millions now free from risk thanks to mass drug administration programs supported by the government, donors, and health partners.
However, challenges remain. Dr. Lyamuya highlighted ethical dilemmas in donor-funded hydrocele surgery campaigns: many patients come seeking treatment but do not qualify under strict funding criteria focused on LF-related conditions. "It hurts us as providers and the patients," she said, "but the funding is limited to conditions like hydrocele caused by LF, so others with similar symptoms are turned away."
Ibrahim was fortunate that Masanja's advocacy convinced surgeons to make an exception.
Edited by Juanita Williams
Chironda was in Tanzania as part of a workshop and field visits hosted by Sightsavers and Tanzania's Ministry of Health, in collaboration with other partners, including Uniting to Combat Neglected Tropical Diseases, a global advocacy organisation that exists to end NTDs by mobilising resources.
