How wearing shoes could eliminate one of the world’s most neglected tropical diseases

For Damenech Dangaro, it started with itching and burning sensations along her toes when she was a child. Then her feet began to swell. Within weeks they had grown to three times their normal size, and soon hard nodules of skin appeared on her toes.

The bouts of headache and fever that followed left Dangaro mostly bedridden for several years. When she ventured out, so severe was the pain in her disfigured legs that she had to half-crawl around her hilly village in south-west Ethiopia.

Her relatives kicked her out of their small wooden home, complaining of the stench from the fungal infections that developed, leaving her to sleep with the family’s cattle and goats. Shunned by her neighbours, Dangaro dropped out of school and stopped attending weddings and funerals.

On Sundays, she would lie in bed crying as she listened to the sound of people singing at the church services she could not attend, a few dozen yards away.

“I didn’t know what was happening when I first developed the symptoms,” says Dangaro, who is 26. “I didn’t seek help from anywhere because I couldn’t afford to. I just assumed I was going to die.”

The human toll of non-communicable diseases (NCDs) is huge and rising. These illnesses end the lives of approximately 41 million of the 56 million people who die every year – and three quarters of them are in the developing world.

NCDs are simply that; unlike, say, a virus, you can’t catch them. Instead, they are caused by a combination of genetic, physiological, environmental and behavioural factors. The main types are cancers, chronic respiratory illnesses, diabetes and cardiovascular disease – heart attacks and stroke. Approximately 80% are preventable, and all are on the rise, spreading inexorably around the world as ageing populations and lifestyles pushed by economic growth and urbanisation make being unhealthy a global phenomenon.

NCDs, once seen as illnesses of the wealthy, now have a grip on the poor. Disease, disability and death are perfectly designed to create and widen inequality – and being poor makes it less likely you will be diagnosed accurately or treated.

Investment in tackling these common and chronic conditions that kill 71% of us is incredibly low, while the cost to families, economies and communities is staggeringly high.

In low-income countries NCDs – typically slow and debilitating illnesses – are seeing a fraction of the money needed being invested or donated. Attention remains focused on the threats from communicable diseases, yet cancer death rates have long sped past the death toll from malaria, TB and HIV/Aids combined.

'A common condition' is a new Guardian series reporting on NCDs in the developing world: their prevalence, the solutions, the causes and consequences, telling the stories of people living with these illnesses.

Tracy McVeigh, editor

Dangaro is one of the estimated 4 million people in Africa, Latin America and Asia affected by podoconiosis, a non-infectious form of lymphoedema (also known as elephantiasis) that causes extreme swelling in the feet and legs. The condition is linked to barefoot farming on red clay soil in areas such as Ethiopia’s central highlands, where about 11 million farmers go without shoes. This type of soil is rich with minerals thrown up by millions of years of volcanic activity, but it also poses risks to those who plough it.

It is believed that the soil particles enter the body through cracks in dry, calloused skin and are then taken up by the lymphatic vessels. Once in the body, they chemically react with human tissue and slowly destroy the lymphatic system.

Over time, the lymphatic vessels become unable to drain away from sufferers’ lower limbs. This results in huge and painful swelling that further damages the skin and makes it easier for soil to penetrate the body. Some people have genes that make them more susceptible to the disease.

The process resembles a “slow suicide of [the] lymphatic system”, according to Dr Paul Matts, the co-founder of Action on Podoconiosis and Integrated Development Organisation (Apido), a non-governmental organisation that has helped treat more than 34,000 podoconiosis patients in southern Ethiopia.

“The root cause of podoconiosis is poverty. It happens because people cannot afford shoes,” says Abraham Asefa, a project coordinator for Apido in Dawro, a region of green rolling mountains and rutted red clay tracks in southern Ethiopia, which sits within the Great Rift valley system.

There are 1.6 million podoconiosis sufferers in Ethiopia, although global data is patchy, owing to a lack of research, poor knowledge among health professionals and the social shame and poverty that prevents many patients from seeking help.

These factors also mean relatively little is known about podoconiosis, despite its prevalence. In the 1970s, Ernest Price, a British physician living in Ethiopia, was the first person to make a connection between the disease and volcanic red soil. Yet little further research was carried out until the mid-2000s.

Until recently, there was just one project dedicated to helping people in Ethiopia with podoconiosis. Today, there are more, but in most parts of the country the disease still goes untreated. Podoconiosis appears in few medical textbooks or on university curriculums, and as a result often confounds health workers.

“If you ask a physician in Addis Ababa [the capital], most likely they will not know anything about podoconiosis,” says Wendemagegn Enbiale, a professor in dermatovenerology at Bahir Dar University. “They have difficulty even pronouncing it.”

“When I ask patients, ‘Why didn’t you go to a health facility for help?’ most of the time they say that someone has told them there is no treatment,” he says.

Reflecting on the lack of treatment for patients, Asefa from Apido describes podoconiosis as the “most neglected of the neglected tropical diseases”.

Yet it is simple to prevent and treat. Wearing shoes is the most important measure, as footwear prevents the soil from penetrating the body. The swelling is treated by washing soil particles from the feet using soap and water, and by regular soaking in salt water and the application of moisturisers. One study from 2018 describes podoconiosis as “one of the few diseases that could be eliminated within one generation”.

In its early stages podoconiosis is reversible, and even patients with severe cases can get their quality of life back by following these simple measures. Podoconiosis patients typically experience episodes called acute attacks: severe headaches and fever, which stop almost immediately after patients start wearing shoes and washing their feet, ending contact between skin and soil.

However, left untreated, it is believed podoconiosis can lead to complications, such as sepsis and organ failure, which can be deadly. Often the psychological impact hits as hard the physical pain, given the stigma and isolation patients face.

“It is frustrating because you don’t need trained health professionals to treat podoconiosis, anyone can do it,” says Enbiale. “Even today in Ethiopia, patients have their legs amputated because physicians think that is the only solution.”

Unable to afford care, or faced with doctors with no knowledge of the disease, many podoconiosis patients come up with their own theories about their condition.

Manjore Merkeneh, a farmer in Dawro with podoconiosis, thought he had been bitten by a snake when his feet first began to swell. Jamnesh Doramo, another podoconiosis patient, thought she had stepped in some ash left over from a “witchcraft ceremony” when she initially developed symptoms.

As with Dangaro, they were shunned by their communities, and seen as cursed. Merkeneh received no professional medical treatment for seven years. Instead, he visited local traditional healers, one of whom tried to treat him by cutting into his swollen legs and sucking out the fluid through a cow’s horn.

“When I first got podoconiosis, wearing shoes was considered a luxury,” says Merkeneh. “No one wore them because of the cost, and we didn’t realise going barefoot was a risk. But now most people are buying shoes from the local market and wearing them.”

That is in large part down to the work of Apido, which arrived in Dawro in 2012. At first it ran its own series of clinics, renting space in local health centres and employing nurses to treat patients with the disease. While effective, the system only reached a small number of people. Since January 2017, Apido has tried a different approach, partnering with all 23 government health clinics in Dawro to train local health professionals to identify and treat podoconiosis. It also supplies treatment kits – containing soap, petroleum jelly, bandages and soaking tubs – which are distributed free to patients.

Alongside this, Apido organises for groups of podoconiosis patients to educate their neighbours about the importance of shoe-wearing and foot hygiene, and runs a public messaging campaign of radio broadcasts, posters and brochures.

“The first year was difficult,” said Matts. “At the beginning doctors didn’t believe us that water and soap worked.”

But now Matts believes the organisation has a model that can be “taken to the rest of the nation”. Apido is preparing to hand its project in Dawro over to the local government, before launching in the nearby districts of Gamo and Gofa.

A big part of Apido’s work is a series of shoe workshops, which produce custom-made, outsize footwear for podoconiosis patients – whose swollen feet cannot fit into the conventional shoes sold at local markets. At Apido’s workshop in the town of Tercha last week, Bantayeyehu Bekele was bent over a sewing machine, stitching together pieces of leather and working from a document of foot measurements taken by health workers.

The workshop – in two rooms of a corrugated-metal shed – produces up to 100 pairs of custom-made shoes for podoconiosis patients each week, although sometimes the work halts when there is a shortage of funding.

Dangaro is now on her seventh pair of boots. Her legs and feet are still disfigured by podoconiosis, but after receiving treatment the swelling in her legs has reduced dramatically – and there is less pain. Today, she can walk around and take part in family life. Recently, she finished primary school.

“The change has been dramatic,” she says. “Before I couldn’t even move my feet, but now I can go to church, I can go to market. I can do all the things I want.”