Elephantiasis in Kamwenge district, Uganda

Living under stigma and poverty with Elephantiasis

Ms Enid Twamusiima with swollen hand sits with her kids at her mother's home at Kyakatooma, Busiriba in Kamwenge district. Photo by Felix Basiime

The limbs of Ms Yowanina Tumusiime of Kipucu, Busiriba in Kamwenge district. She lives in agony. Photo by Felix Basiime

BY FELIX BASIIME

& GEOFFREY MUTEGEKI

May 24, 2012

KAMWENGE: The road to Busiriba is bumpy. We drive from Fort Portal town on Kamwenge road through Kibale National park and within an hour we are at Bigodi trading centre.

We turn left and within 10 minutes we are already inside Busiriba Sub County.

It is a sunny day at Kyakatooma village, Busiriba in Kamwenge district. We find Ms Enid Twamusiima, 30 sitting on a mat breastfeeding her 6 months old baby outside her mother’s home.

She is in great pain because her left arm is swollen and cant lift her baby for breast feeding, her mother helps her. The older kid of 2 and half years is crying.

She has just come by a boda boda bike with her two children from Garuhuma village in the neighboring Kyenjojo district where she was married to Mr Matayo Kyalimpa 4 years ago.

She says she first had her left leg swell when she was still 16 but 12 years later, her left arm started swelling too.

“I have just come home to my mother (Ms Margaret Tindimutuma) so that she can nurse me, the situation at my marital home was unbearable” says Twamusiima.

“My husband took me to hospital in Fort Portal, we later tried herbs but all in vain, I cannot dig, or wash my clothes, my husband has no job, I can’t dress or bathe myself, am helped by others to breast feed my baby, so my husband told me to go back home” Twamusiima says.

Back home, her brothers, Francis Amooti, 32, and Emmanuel Arinaitwe, 27 are also suffering from elephantiasis with swollen legs and feet.

They are both busy fighting with flies on their feet. As I interview Tindimutuma, a bad odur from Arinaitwe’s feet envelopes us. They are living in pain and misery.

Twamusiima is not alone in this stigmatization thing. In the neighboring Kipucu village, also in Busiriba Sub County, Ms Yowanina Tumusiime, 55, has her both feet swollen and smelly; puss is oozing out despite the linens she uses to cover her feet.

She says she was divorced by her husband before he died in 2000.

“In 1996, he rejected me after my feet worsened by swelling and married other two women, I suffered a lot” Tumusiime says, adding, “My daughters constructed for me another house, but I don’t have money for treatment because I no longer dig”

Tumusiime says that when she tries to walk in the neighborhood, children throw at her stones thinking that she is mad.

“This irritates me most because am not mad. Am living a miserable life, my sons are around but don’t care, it is only my daughters who try but only send few items and money on Christmas day” Tumusiime says sadly.

Ride Africa, a Fort Portal based NGO has recorded about 58 patients in Busiriba in its survey conducted in October 2011 but says the number is bigger in the area but due to stigma, people hide and or use long clothes or gum boots to cover their feet.

“Most people cover their feet with long trousers and dresses, or wear gum boots in Busiriba to hide their limbs” says Mr Michael Kisembo, a Project Officer with Ride Africa heading Natural Resource and accountability monitoring.

Ride Africa has found that there is no data by the district authorities on the extent of elephantiasis in the area and there is poor information flow, health officials don’t know how to handle the disease.

“We identified the problem, carried out a social survey in the four parishes of Busiriba, Kaniimi, Kahondo and Bigodi and found out that women of 35 years and above are the most affected” Kisembo says, adding, “People think the disease is caused by elephants that escape from the nearby Kibale National park which had caused a conflict between the locals and

UWA officials until we held a dialogue that dispelled the myths”

Ms Gloria Atuhaire, 14 from Kyairumba village has been sick for eight years; she has extremely swollen feet, and lives a misery life. She can hardly walk with ease and worse still she is an orphan.

“I get severe fever and pain all the time, I cannot walk with ease, my classmates laugh at me at school but I have to push on. I have never got any treatment; every time we go to the health unit they tell us we go to Fort Portal but no one can take me” Atuhaire says.

She adds, “I feel very isolated, when I see my age mates playing and sometimes not wanting to play with me. This is the most terrible disease that I have seen in my community. I wish I could get some help and get healed”

However, the patients have petitioned the district authorities for help.

“We the undersigned people that live with elephantiasis in Busiriba sub county, observe that the district local government provides support and treatment to people suffering from different diseases in the district but we have not been given any attention, we live in isolation” read part of the petition.

Following this, the district health officer, Dr Ocen Gregory asked the Ministry of health to carry out a survey in Busiriba and identify why Busiriba is the most affected than other areas.

“We request your office to intervene so that a technical survey for Lymphantic Filariasis is conducted in the district since the people are living in very painful, uncomfortable life and the disease has reduced the sufferers ability to live a normal life” Dr Ocen wrote to the Program Manager, Neglected Tropical Diseases, Uganda.

Health Dilemma

When contacted, Ocen said that the survey was carried out and some samples taken from some patients and it is now confirmed as Elephantiasis.

“The infection was there about 20 years ago, nothing we can do now apart from caring for the patients” he said on phone on Thursday.

According to the district authorities, Busiriba Sub County has a population of about 26,700 people who are living adjacent to Kibaale National Park. Kamwenge district has an estimated population of 363, 200 by 2010.

Men, women and children as young as eight years in Busiriba have experienced the disease for over 20 years. They say that they have tried both medical and herbal medicine in vain and have given up.

Dr Vincent Olowo, the district environmental officer says reasons that “When a person keeps on stepping on the volcanic soils there are some minerals or soil particles which keep entering the body through the pores in the feet, as the soil accumulates, it blocks the pores and goes into the lymphatic system and once it is blocked, body wastes will not come out and in the end the body swells due to the pressure exerted”

He says the disease covers the whole district but Busiriba Sub County is the most hit with very many cases. Other environmentalists say that the people in Busiriba could be affected by the waters of Busabara wetland which could be having some minerals that enter them through the feet as they fetch water.

“The disease is in both Kibale county and Kitagwenda, but the most alarming place is Busiriba Sub County, but the whole district is not safe” Dr Olowo says.

Mr Eriya Mujungu, the deputy resident district commissioner has asked the residents to wear  shoes and keep good hygiene as one of the preventive measures for the disease but how many can afford to buy shoes is the big question in Kamwenge.

However, the fight against stigma is not all lost, Ms Mauda Birungi of Kitwe village in Busiriba cant lift her both swollen legs, she is helped all through by her husband, Mr Godfrey Bitungwa. The couple got married about 3 years ago.

“I married this lady about 3 years well aware of health problem; her relatives told me that they had failed both at medical and herbal treatment” Bitungwa says, adding, “I do everything for her at home including cooking”

“In this village, some people have rejected me but others like but my husband is there for me, I don’t mind” Birungi who spends a day sitted on a mat outside their house says. On Sunday, the couple goes to the nearby Kitwe church (COU) as Birungi walks slowly with two sticks to support her.

UTILITIES

According to the World Health Organization, Elephantiasis is characterized by skin thickenings and the gross swelling of underlying tissues, particularly in the legs, the scrotum, the vulva, the male genitals, the arms, and the breasts, that may have underlying accompanying internal damages to the kidneys and lymphatic system.

Treatment options for patients with Elephantiasis may include Albendazole, Diethylcarbamazine, Ivermectin, and Doxycycline for worm infestations, rigorous hygiene of the affected areas, lymph fluid flow promotions that help reduce the frequency of acute inflammations, and surgical treatments for Scrotal Elephantiasis.

The according to Kamwenge district health department, the disease was first reported in the district in 2004 and authorities wrote to the Ministry of Health which sent a team for 3 days to find out the cause of the disease where it found out that the diseases was caused by a tropical worm called Filariasis and transmitted to people by a mosquito but no action by the district and the ministry is yet done.

Prevention of the disease

Sleep under treated mosquito nets, always wash the legs and keep the clean, always were shoes to avoid direct contacts with the soil, there is need for periodic deworming of children in the area.

Symptoms:

Generally acquired in early childhood, taking several years to develop, and typically affecting more men than women, the symptoms of Elephantiasis may include such things as kidney damages, lymphatic pathologies, hydrocoele, excessive fluid collections around the testicles, body parts swelling up to ten times their normal sizes, chronic lymphedema, immune response deficiencies, and lymphatic system failures.

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