Irish journalist Eleanor Brennan travelled to Tanzania with the support of the Simon Cumbers Media Fund
In 2016, the World Health Organisation launched their four year campaign to eradicate global leprosy by 2020.
Despite being a year into WHO’s eradication scheme, 22 countries are still considered to be ‘high burden’ and 96% of leprosy cases have been reported from these countries in the past year alone.
Leprosy is defined as a chronic infectious disease caused by Mycobacterium leprae. It can affect the skin, peripheral nerves, eyes and limbs and can take up to 20 years for symptoms to appear.
In 1995, Multi Drug Therapy became freely available worldwide and over 16 million patients have been treated with MDT over the past 20 years.
The Rufiji District in Tanzania is one such area where the disease is considered endemic.
Last November, I travelled to Tanzania with the support of Irish Aid and the Simon Cumbers Media Fund. I wanted to know more about the disease and the social stigma associated with a diagnosis.
In the remote rural village of Kindwitwi, I met with Abdallah Nguyu, a social worker and leprosy advocate, who volunteers as a leprosy centre manager within the Rufiji District.
“It is a real disease despite what people might think. It is caused by bacteria. Before the 1980’s there was no proper cure. But now, you can catch leprosy and be treated and cured” Mr Nguyu explained.
“The problem with leprosy is stigma. There are many people here who are cured from leprosy but they cannot go home because of the stigma. People come from different areas of Tanzania to be cured and cannot return to their families.”
For most people Leprosy begins with skin patches across the body. These patches carry no sensation for sufferers. Often, the disease will go undetected for many years and those infected with it will lose toes and fingers as their nerves become more damaged.
Salima Mwichande contracted leprosy over fifty years ago following the death of her parents from the disease. She travelled from Northern Tanzania to receive treatment.
“I came to the village on my own. I have no relatives. All of them have died and I have no children. I depend on the leprosy centre. I depend on the village,” she said.
Salima receives full time care from the leprosy centre in the village. She has a caretaker who feeds, bathes and clothes her daily.
One of the many challenges facing people with leprosy is social isolation.
Saidi Kabia Mapane came to the village many years ago after he contracted the disease.
“I was separated from my parents. They did not have leprosy but I did,” he explained.
“I had treatment in the village for my leprosy and I am grateful. I like it here in the village because they have cured me.”
Abdallah Nguyu and his colleagues are desperate to abolish this social stigma.
“We try not to accept any more patients into the village,” said Mr Nguyu.
“If we continue putting people with leprosy together in one place, we are actually increasing the stigma ourselves.
“Poverty contributes to leprosy. It is a vicious cycle.”
The centre in Kindwitwi village works closely with the national Leprosy and TB programme – which aims to provide medication, funding and support to patients and their families.
Sazuma Nassoro Kipola is the village’s leprosy representative and works alongside the national programme to spread awareness of the disease.
He receives funding from the government so that he can create specially designed shoes for patients suffering from the debilitating side effects of the disease.
“No leprosy patient pays for anything. The government pay for it all. If you need medicine, shoes or a new leg – the government will sponsor you,” he explained.
“I advise patients to wear the shoes all the time. When they are working or at home or school, they must always wear their shoes. I make my shoes according to each individual’s disability.”
Athumani Nguogani is a fulltime care patient and receives the shoes from Sazuma. He is also involved in the village awareness campaign.
“It was a long time ago when I got sick. I heard about the treatment available here, so I travelled on my own,” Mr Nguogani said.
“I am happy now because I have been cured and my family are not sick.”
Throughout my visit to the Rufiji District, I noticed a growing sense of optimism amongst local villagers and community leaders.
In recent years, there has been a significant decrease in the amount of young people diagnosed with the disease.
Frank Taji, a village resident and caretaker for the leprosy centre guesthouse, has noticed an increase in young people living and working in the village.
“People with leprosy can have a good life now,” he said. “There is a generational gap. Young people don’t really get leprosy anymore because of awareness. In fact, a lot of young people travel to this village to get married.”
Frank’s children are free from the disease and have stayed in the village and have established their own shops and businesses.
However, despite the region’s positivity - the fight to eradicate leprosy by 2020 remains a difficult and challenging task.
“Right now, I do not believe eliminating leprosy is possible. To eliminate you must have a vaccine and there is no vaccine for leprosy. At the moment, we must focus on the diagnoses,” Mr Nguyu said.
In the last quarter of the year, Mr Nguyu and the village shoemaker Sazuma Nassoro Kipolya have travelled to four villages in the District to spread awareness of the disease.
Leprosy is a complex and challenging human disease.
What became clear to me throughout my time in Kindwitwi is that education is the key to tackling leprosy and that a lack of understanding or awareness of this disease, especially from those in very isolated and impoverished areas, has made it difficult in some cases for people to access the appropriate treatment.
When I was leaving Kindwitwi, Mr Nguyu outlined his hopes for the future and for his patients.
“In the future, I would hope to see all leprosy patients cured and living independently with no assistance,” Mr Nguyu said.
For now, however, it seems the fight against leprosy must centre on awareness and treatment and the knowledge that leprosy is indeed a disease that is curable.
Eleanor Brennan travelled to Tanzania with the support of the Simon Cumbers Media Fund.