Often hidden and silent though visibly disfiguring, the experience of elephantiasis is one of anguish, pain, immobility and stigma.

Abandoned and isolated, Peter Oyuki was shunned by his wife because of his unusually large deformed leg.

The 51-year-old Ugandan, who has suffered from elephantiasis since 1983, says, “It began with itching then I started feeling cold and difficulty in walking. My legs became painful and heavy to carry. I have tried to get this illness treated and failed. I do not know what causes this disease.”

No sign of the parasitic worm

It is estimated that 120 million people living in tropical areas are affected, according to statistics by the Drugs for Neglected Diseases Initiative (DNDI).

The Ministry of Health in Uganda reports that at least 4.7 million people suffer from elephantiasis, with the poorest Ugandans forming the majority. Parasitic worms, transmitted through mosquito species, have been typically linked to the disease.

When clusters of cases were reported in the Kamwenge District of western Uganda in 2015, lead researcher and senior field epidemiologist from the Ugandan Ministry of Health, Christine Kihembo and her colleagues took to the fields, assuming an outbreak of elephantiasis though the region showed no previous record.

However, blood samples from 52 victims showed no signs of the filarial worms associated with the disease. But interestingly, in their interviews with affected farmers, one thing stood out – they farmed barefoot.

That hint opened up a new revelation – the soil. The scientists noted that samples of the volcanic soil contained irritant minerals that could penetrate the skin and cause inflammation, thus leading to a build-up of scar tissue.

“Little crystals get into your lymphatic system. ... After many years, they block it so the lymph can't draw back and your foot swells up,” said David Mabey, professor of communicable diseases at the London School of Hygiene & Tropical Medicine.

Unreported and stigmatised

The scientists concluded that the farmers were suffering from podoconiosis, a Greek term coined by British surgeon Ernest Price who lived in eastern Ethiopia in the 1970s. Translated, it means “foot” and “dust”.

Kihembo said, “People can be suffering from podoconiosis, a non-infectious disease, for decades before it becomes obvious that they are developing elephantiasis.” She speculated the western Ugandans have been suffering in silence for more than 30 years.

She explained, “At first, farmers say they have pain, itching and swelling in their feet, in the evening, after working on the farm. But in the morning, it's gone.”

This cycle may go on for years till one morning when the victim feels persistent swelling and pain in his legs, feet and toes. Movement becomes a challenge, and when the skin thickens and breaks open, ulcers and infections develop.

“It causes so much pain. So much pain,” she said. “Once elephantiasis has set in, you cannot reverse the disease.”

Looking at the data, the lead researcher found the illness trend had remained stable and attributed it to a lack of awareness among local health workers and the stigmatisation of the disease.

“Affected people were not reporting to health facilities,” she said.

New research found no significant link with family history

Officials in the ministry are now working with local health workers to manage the disease. “This disease is totally preventable with protective shoes and foot hygiene,” Kihembo said.

With the main victims being poor, Kihembo felt these people are not in a position to afford shoes. “But really what the community needs is economic capacity so they can buy shoes," she added.

Podoconiosis was discovered in 2001 to be endemic in eastern parts of Uganda. Health officials had speculated that this may have been the underlying cause of the new epidemic.

Previous studies pointed to genetics when family clustering was reported in Riwana, Ethiopia and Burundi but the current study found otherwise.

“Podoconiosis is still widely under-recognised in tropical Africa,” said Gail Davey, professor of global health epidemiology at Brighton and Sussex Medical School.

The latest findings, along with the investigation in 2001, “will help mobilize resources to map the distribution of podoconiosis throughout the country and then direct prevention and care programs to affected districts,” according to Davey. MIMS

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