By Paige Rohe
Ms. Rohe is an assistant director for Health Programs publicity and social media manager for The Carter Center.
It may be tempting to hear about a neglected disease like trachoma and the 390 million people globally at risk and think of trachoma only as another sad statistic in a world where there is too much suffering and where there are not enough solutions.
Yet, while trachoma is a disease of poverty, it also was once much more prolific than many people know. Until only a few decades ago, trachoma was endemic to the United States and my home state of Georgia.
Wiped out in many countries through economic development and improved access to health care, trachoma has been relegated to only the most neglected communities. Today, approximately 4.6 million people are at risk of immediate blindness from the advanced stages of this bacterial infection.
After years of repeated, untreated trachoma infections, people with trachoma suffer from trichiasis, where one or both eyelids can become scarred, causing the eyelashes to turn inward and scrape the cornea with every excruciating blink.
Although the scientific definitions of this disease are clear, it was only through the eyes of others, in one of the most remote places on earth, that I was able to better understand the real story behind trachoma. It isn’t just that trachoma causes painful disability; it also creates unfathomable indignity and despair.
Near Gondar, Ethiopia, at the beginning of the rainy season, I met two people who were in danger of becoming yet another set of statistics: a widowed farmer named Centayo Fengte and a middle-aged, single woman named Fanta Michael.
Fengte told me he suffered in pain for two years from his condition, knowing there was free surgery available to treat him but afraid of the procedure. (I don’t blame him. Eyelids are a sensitive part of the body for most of us. Fortunately, the Carter Center-supported surgery to correct trichiasis takes less than 15 minutes, and after about two or three days, people usually can resume their normal activities.)
When trachoma made it too difficult for Fengte to farm, his son took on the burden of caring for his crops. When trachoma prevented Fengte from cooking for himself, his oldest daughter began bringing his food. Eventually, Fengte admitted grimly, his youngest child had to quit school to help him around their home. Enough was enough for Fengte, and he made the decision to present himself at the Chuahit Health Clinic.
Because of trichiasis, Fanta Michael was not able to marry and therefore lived in a small hut next to her aunt. One little girl I met, unreservedly and not without some pity, called Michael the “poorest woman in the village.” The children of Michael’s village all knew to wash their faces and receive the donated Pfizer antibiotic Zithromax® to treat trachoma, but prevention efforts had come too late for Michael. Like Fengte, it took some convincing from local health workers before Michael agreed to go to the clinic for her treatment.
I had heard that experiencing blinding trachoma was like a ‘living death,’ but as a trachoma patient may know, hearing and seeing are very different things.
I left Amhara region with a profound understanding that thousands of people with their own stories, hopes, and dreams have the chance to cheat this ‘living death’ with help from the Ethiopian government, Lions Clubs International Foundation, and The Carter Center.
Fast forward to this past February when I asked an Ethiopian colleague to see how Fengte and Michael were doing so many months after their surgeries. His team found them and sent photos.
Fengte still has some other concerns about his eyes, but he smiles in his photo. He now says he encourages people in his community to get checked for trachoma and seek treatment like he did, even if they are afraid.
In another photo, Michael sits outside her hut in a dress with purple flowers, a color she seems to favor. Her hair is a little longer than I remember. She doesn’t hide her face as she did when we met her. She told my colleagues proudly that she feels she can do any kind of work now, day or night.
I have spent the past six years at The Carter Center trying to help raise awareness about neglected tropical diseases like trachoma, and I have read numerous academic papers and news articles on the importance of not waiting for economic development, or even roads, to reach communities before health work can begin. But sometimes, the most powerful evidence of the value of fighting trachoma is the sight behind the statistic.
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