Mystery Disease

Her name is Dembi Fedasan. She is 35 years old. She got podo when she was 15. After that she couldn’t go to school—it was too far to walk on her painful feet, which grew swollen and enormous. Nobody would marry her. She couldn’t work. She had to hide from all social contact, because of the hideous smell and because many people think podo is the result of a curse. Her life was over.

Just three years ago Dembi learned that treatment was available. She lives too far from the clinic to afford regular bus fare, so she has moved into town and works as a maid. Already the simple treatments—foot baths, bleach, lotions, pressure bandages—have made a big difference. She hopes that she will be able someday to work in the fields and become, again, a functioning member of the human race.

**

I’ve thought long and hard about this: I’m not going to put up a picture of a foot with podoconiosis. Last night I showed my son Silas, 24, a photo, and he got up and moved away from me, fearing I would show him another one. (If you really want to see podo, try http://www.thaf.org/WWW.THAF.ORG/HOME_PAGE.html.)

Podo is gross. In the worst cases it looks distinctly as though someone’s foot is turning into a cauliflower. A rotting cauliflower. It’s hard to believe this can actually happen to feet. It happens to millions of feet.

I went to Ethiopia to learn about podo and the people who are working to combat it. It’s a disease few people, including tropical disease specialists, have ever heard of. Podo was only discovered in the 1970s—very late for a disease that severely afflicts millions of people—and the organizations I’ve found working on it didn’t get launched until the late 1990s.

Why so unknown? Probably because podo affects only the poorest of the poor. Somebody like you or me will never get it or know anybody who has it. That’s because you don’t get it if you wear shoes. It only affects people who live in high-altitude volcanic soils and work the soil barefoot. Podo is caused by silica in the soil penetrating the feet and scarring or clogging lymphatic vessels in the legs and feet. Severe itching and swelling are the initial symptoms; soon feet grow extremely painful and the victim can barely walk. Infections begin, and the smell is awful. People are stigmatized like lepers. They hide.

Truthfully, the extent of podo isn’t even known. Nobody has mapped its incidence. We know it affects people in at least ten African countries and in several other parts of the world. Experts estimate one million victims in Ethiopia alone. But the problem is so unrecognized, the local medical people frequently have no idea how to treat it. (It’s a form of elephantiasis, and doctors sometimes prescribe medicine that kills the worms that cause the more familiar form of elephantiasis. This does no good at all.)

I interviewed about 20 people with podoconiosis in Dembi Dollo, Ethiopia, where they are being treated at a clinic run by the Daughters of Charity, a Catholic order. Although the pain and the stigma these patients described were awful, what stood out most was the loss of the dignity of work. In a community that lives by subsistence farming, podo patients cannot contribute economically. It’s just too painful. Someone who can’t farm becomes a dead loss. Very often no one will marry them; they become dependent on family members who are already barely able to survive. They work as servants in the kitchen. Sometimes they literally starve to death.

The brighter side is how easily they can be helped. With very simple, hands-on treatments most cases can see symptoms greatly alleviated if people are reached early enough. And prevention is simple: shoes.

That’s not so simple. In these communities, shoes are a luxury. Getting enough food is the project of every day—not shoes. When do children ever get shoes?

What’s inspiring to me is the ad hoc coalition of people working to combat podoconiosis. Several Dutch and American doctors have happened on it and taken up the cause of raising money and helping to establish treatment plans. Catholic sisters embrace the hands-on care and careful follow-through that are needed. Medical researchers—including a whole new generation of Ethiopian students–are trying to get research dollars so that the disease can be better understood. Toms Shoes, a very hip social entrepreneur company, provides shoes for others to distribute.

If podo is to be eliminated, this ad hoc coalition won’t be enough. Professionals will need to supplement volunteers and make long-term strategic plans. But that comes only after, and if, people of good will and enormous optimism step in to do what they can. That’s happening. I’ll be writing about some of these people in an article for Christianity Today Magazine, which sent me to Ethiopia to get the story.

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2 Responses to “Mystery Disease”

  1. Sharon Daly Says:

    Hello Tim, I’m so glad that you traveled to Ethiopia to see the condition of those suffering from podoconiosis. This was a condition that really pulled on my dad’s heart strings. Dr. Nathan Barlow was a medical doctor here in Ethiopia from the end of 1945 to 1977 when the communist government took the mission hospitals. He saw some of this disease as early as the 1950s and was trying various means of treatment; however, for much of the time he was the only doctor in Wolaitta. From 1977 to 1997 my parents were in Central African Republic and Zaire. In 1997 a Dr. Mary Vanderkooi asked Dr. Barlow to return to Ethiopia. He started going to her outclinics and saw more and more podoconiosis ( also known as Mossy Foot disease). When people saw that there was someone willing to help them, they started coming out of hiding in their houses to get help. Dr. Barlow started the Mossy Foot Project in 1997.
    We have been continuing this work in the Wolaitta province. There are currently 15 clinics treating over 4,000 patients a month. We make large, oversized leather shoes for the clinic sites, have vocational training for the young people afflicted by the disease in order to help them become self-sufficient, have micro-credit loans for the women afflicted with this disease who have no one to help them. Also, we are working in conjunction with local church leaders to build houses for women who are widows or have been abandoned by their husbands due to the disease. The Mossy Foot Treatment and Prevention Association provides the roofing, door, windows and nails.
    Pastor Zewdie on our staff has leadership meetings with church leaders from various denominations. He explains about the cause of the disease and the plight of these unfortunate women, and recruits them to contribute the labor, timber and the plaster (mudding). Also, we are working on prevention through
    education at the clinics and local schools, and through providing shoes for the children in the affected families, since they are much more at risk than other children. TOMS shoes is providing these shoes for us. Please look at our website http://www.mossyfoot.com. I would be delighted to hear from you. Thank you for being a voice for those who do not have a voice of their own.

    • timstafford Says:

      Thanks for writing, Sharon. Unbeknownst to you while you are in Ethiopia I was talking to your husband Jim about much of what you write. I’ve heard repeatedly about Mossy Foot and your excellent work in Ethiopia–the model program, really.

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