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Women are facing rejections from their husbands while those who stay in marriages face stigmatisation from the community, cannot carry out household chores.
At 30, Ms Enid Twamusiima cuts a posture and complexion of somebody twice her age.
On a sunny day in Kyakatooma Village, Busiriba Sub-county in Kamwenge District, she can hardly breast feed her six-month-old baby because of a painfully swollen left arm.
A decade battle
Twamusiima is among hundreds of residents of this area who are afflicted by elephantiasis – a disease characterised by thickening of the skin and 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.
Twelve years since she was first diagnosed with the disease, Twamusiima has not got any medication that has successfully treated her condition.
Now at her mother’s home in Kyakatooma Village where she has just arrived on a motorcycle taxi (boda boda) with her two children, she is hoping her mother will help her with chores she cannot perform anymore.
“I have just come home to my mother so that she can nurse me, the situation at my marital home was unbearable” she says.
“My husband took me to a 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 cannot dress or bathe myself, I am helped by others to breastfeed my baby, so my husband told me to go back home,” Twamusiima says.
She has been married for four years to Matayo Kyalimpa but her condition has been a detriment to her marital life.
Her two brothers, Francis Amooti, 32, and Emmanuel Arinaitwe, 27, are also suffering from elephantiasis with their legs and feet swollen.
Kamwenge District is one of the areas hit by a high prevalence of elephantiasis which is caused by filarial worms.
In a neighbouring Kipucu village, also in Busiriba Sub-county, Yowanina Tumusiime, 55, has both feet swollen and smelly. 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.
“My daughters constructed for me another house, but I don’t have money for treatment because I no longer dig,” she adds.
Tumusiime says when she tries to walk in the neighbourhood, children throw stones at her thinking she is mad. This irritates her the most.
Elephantiasis is one of the world’s forgotten diseases occurring mainly in Tropical Africa where poverty is major concern.
Most people are unable to seek medical help during the early stage of the disease which only gets worse with time.
According to Ride Africa, a Fort Portal-based NGO, it recorded about 58 patients in Busiriba Sub-county in its survey conducted in October 2011 but says that there are still so many people in the area who hide due to stigma.
“Most people cover their feet with long trousers and dresses, or wear gumboots in Busiriba to hide their limbs,” says Michael Kisembo, a project officer heading natural resource and accountability monitoring with Ride Africa.
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.
He also dispelled a myth that in the area the disease is caused by elephants that escape from the nearby Kibale National Park which had caused a conflict between the locals and Uganda Wildlife Authority officials.
Gloria Atuhaire, 14, from Kyairumba Village has been sick for eight years.
Atuhaire’s feet are swollen, making it impossible to walk with ease. What makes her condition unbearable is that 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,” Atuhaire says.
She has never received any treatment for her ailment, saying every time she visits a health unit, they refer her to Fort Portal hospital and yet there is no body to take her there.
“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,” Atuhaire explains.
The patients have petitioned the district authorities to give them 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,” reads part of the petition.
Following the petition, the district health officer, Gregory Ocen, has asked the Ministry of Health to carry out a survey in the area and identify why the sub-county 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” Mr Ocen wrote to the programme manager, Neglected Tropical Diseases, Uganda.
Mr Ocen said a survey was carried out and some samples taken from some patients but that the report is not yet out.
Men, women and children as young as eight years in Busiriba Sub-county have been suffering from the disease as far back as 20 years ago.
But Dr Vincent Olowo, the district environment officer, says the disease might be Podoniosisor Nonfilarial Elephantiasis since most people who are affected have swellings in the lower parts of the body.
“We don’t have cases of swellings of the hands, breasts and other upper body parts, since we don’t have them we are most likely to say that these people have podoniosis which is caused by the soil,” Dr Olowo explains.
“When a person keeps on stepping on the volcanic soils, there some minerals or soil particles which enter 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,” Dr Olowo explained further.
He says the disease has affected the whole district but Busiriba Sub-county is the worst hit.
Other environmentalists say residents could be affected by the water in Busabara Wetland which has some minerals that enter the body through the feet as they fetch water.
Mr Eriya Mujungu, the deputy resident district commissioner, has asked residents to wear shoes and maintain good hygiene but whether locals can afford the shoes is debatable as Kamwenge is one of the districts with high poverty levels.
A disease that has left residents battling stigma
OUTBREAK. Elephantiasis disease was first reported in the district in 2004.
Generally acquired in early childhood, taking several years to develop, and typically affecting more men than women, the symptoms of elephantiasis include; kidney damages, lymphatic pathologies, hydrocoele, excessive fluid collections around the testicles, body parts swelling up to 10 times their normal sizes, chronic lymphedema, immune response deficiencies, and lymphatic system failures.
-Sleep under treated mosquito nets
-Wash legs and keep them clean
-Wear shoes to avoid direct contacts with the soil
-Periodic deworming of children
TREATMENT. Treatment options for patients with elephantiasis 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.
Busiriba is a Sub-county found in Kibale County, Kamwenge District. It is a five hour-drive from the capital, Kampala through the Mityana-Mubende-Kyegegwa-Kyenjojo road. According to district records, Busiriba Sub-county has a population of about 26,700 people who are living adjacent to Kibaale National Park.
Population. It has an estimated population of 363,200 people by 2010 and a total land area of 2,304 km2.
Livelihood. The district is predominantly rural with some of the worst poverty levels in the country.
Health. It does not have a hospital.