Anguish, pain, immobility and stigma, is what Peter Oyuki and Patrick Balikoba have. The two have been abandoned by their wives because of their large deformed legs and feet, that are a result of elephantiasis.
Oyuki, who has lived with elephantiasis for 31 years, says he lost his wife, the mother of their three children, to his neighbour in Lukindu B Village, Bukatube Sub-County in Mayuge District in eastern Uganda.
“My wife left me three years ago. My handsome neighbour took her away after convincing her that she should not live with a sick, disabled and ugly man like me,” Oyuki, 51, says in sad low tone.
Unlike Oyuki, Balikoba, a 47-year-old resident of Buseera B Village in Busakira Sub-County, Mayuge District, is still wondering what forced his spouse with whom he had five children to move out of their marital home. “My wife left a month ago and she did not give a reason for leaving. I don’t know if it was due to my illness,” Balikoba wonders.
Oyuki recalls that the disease started in 1983. “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,” he shares.
In search for a remedy, Oyuki went to Buluba Leprosy Hospital in Mayuge District where the doctors recommended amputation. “When I went to Buluba Hospital, I thought I had leprosy but when the doctors suggested amputating me, I left because I feared losing my legs. Then I tried traditional medicine which failed. Meanwhile, the symptoms have increased and I have lived like this since,” he says.
Balikoba started suffering from elephantiasis a year ago. “It began with itching and swelling of my legs. The pain comes with heat and sweating all over my body, mainly during the rainy season. The itching happens only in the dry season,” Balikoba says.
“I don’t know what caused this disease. I have not yet got any form of medication because I wasn’t aware that I could get treatment in hospital,” Balikoba adds.
Oyuki’s leg develops wounds on which he applies Procaine Benzyl Penicillin (PPF) or amoxyl capsule powder. He continues to take the Ivermectin tablets, which are given free of charge by the ministry of health once every year. Extreme heat and coldness cause Oyuki a lot of discomfort. “I usually experience a lot of pain when it is very hot or cold. I get so uncomfortable that I can’t even move around,” he says.
According to the Mayuge District Vector Control Officer, Juma Nabonge, Oyuki’s condition is in the irreversible stage of elephantiasis and he will have to live in this sad state.
“We shall make sure Balikoba starts getting drugs from the Village Health Team,” Nabonge promised, adding, “The drug will kill the worm but unfortunately the size of his legs will remain the same.”
“I do not know if I will ever heal. My hopes are in the doctors. Otherwise, I have no option but to look after my children until the time I leave this world. My extended family will take care of my children when I die,” Oyuki says.
“My wish is government should treat me so that I can heal and other sufferers,” Balikoba says, adding rather optimistically: “If I heal, I will marry again.”
The plight of Oyuki and Balikoba is an example of the social stigma and discrimination that victims of Neglected Tropical Diseases (NTDs) face in Uganda. It is not only the male victims who suffer, but the women too, are chased from their matrimonial homes by their husbands.
What causes elephantiasis?
Elephantiasis, an NTD, scientifically known as lymphatic filariasis (LF), is caused by tiny thread-like parasitic filarial nematode worms called wuchereria bancrofti transmitted by mosquitoes to humans. Infection is acquired early in life but gradually begins to cause internal damage.
Adult worms are found in the lymphatic vessels (used for carrying waste body fluids), where they cause damage, leading to elephantiasis (swelling of the legs and feet), hydroceles (swelling of the scrotum), the vulva in women and other parts of the body. However, the majority of infected individuals show no physical signs.
According to the elephantiasis/podoconiosis Programme Manager in the ministry of health, Gabriel Matwale, the symptoms filarial fevers, which are often mistaken for malaria. One will have general body weakness and body pains.
Also, the victim’s skin stretches so much that it hardens, thus turning into a habitat for organisms like bacteria, fungi and viruses resulting in full blown elephantiasis.
The disease derives its name “elephantiasis” from the fact that the legs and feet swell a lot.
According to the Drugs for Neglected Diseases Initiative (DNDI), elephantiasis affects an estimated 120 million people living in tropical areas. The ministry reports that elephantiasis mostly affects the poorest Ugandans. It is a major public health and socio economic problem with 4.7 million people in 54 districts out of the 112 suffering from the disease. Another 14.5 million are at a risk of being infected.
In some communities in eastern and northern Uganda, up to 25 per cent of adults show chronic signs of LF; mainly hydroceles.
The NTD Control Programme provides annual drug treatments to nearly 13 million people in affected areas under its Mass Drug Administration (MDA) activity.
MDAs occur annually in districts endemic with NTDs that can be controlled with medicine. The first MDA with ivermectin and albendazole against elephantiasis was carried out in 2002 in two districts (Katakwi and Lira), reaching coverage rates of about 75 per cent.
The MDA has been scaled up to cover all the 54 affected districts. Health workers also conduct hydrocele surgeries. There are plans to scale up the number of surgeries conducted by implementing surgical camps.
Those with elephantiasis get health education to control secondary infections and alleviate pain. Health officials refute claims that elephantiasis is caused by witchcraft and hydroceles are hereditary. Matwale says treating elephantiasis in Uganda is not clear-cut like treating malaria.
“This is chronic infection where obvious signs (elephantiasis and hydrocele) appear later in life. Our strategy is to interrupt transmission where by people are given medicines (Mectizan and Albendazole) despite their infection status. By doing that, those who have it will have reduced the worm load, which can’t be picked by the mosquito.”
“The major challenge is to convince those without the signs to take the medicine. Also, there is little focus or help for those already infected because the medicine has little effect. Lastly, we lack transport and operation funds to intensify supervision of village health team members who are our frontline service providers,” Matwale adds.
According to the ministry more than 11 million Ugandans are suffering from NTDs. Uganda has 12 NTDs. World Health Organisation says NTDs such as leprosy, elephantiasis and leishmaniasis (kala-azar) are feared and the source of strong social stigma and prejudice. As a result, these diseases are often hidden – out of sight, poorly documented and silent.