Rufiji Leprosy Trust is a charitable trust supporting the Kindwitwi Leprosy Care Centre in the Rufiji area of Tanzania.
The care centre assists in:
~ finding and treating people living with leprosy in the Rufiji area
~ supporting people all people affected by leprosy throughout the Rufiji area
~ promoting self-sufficiency of people living with leprosy and their families.
As leprosy is curable, many think the disease is no longer a problem, however it is listed as a Neglected Tropical Disease (NTD) by the World Health Organisation, which means it is especially common in some of the world’s poorest areas.
The Trust prides itself on being totally managed by volunteer Trustees; the only paid employees are those who carry out the Trust’s work in Tanzania.
Last year, with the support of the Simon Cumbers Media Fund, journalist Eleanor Brennan travelled to Tanzania to find out more about leprosy, its social stigma and impacts for a newstalk radio in Ireland. Here are the reflections of her visit:
the Last Relic of the Old World
In 2016, the World Health Organisation launched its
four-year campaign aimed at accelerating towards a leprosy free world.
Leprosy, defined as a chronic infectious disease
caused by Mycobacterium leprae affects skin, peripheral nerves, eyes and limbs.
It can take up to 20 years for symptoms to appear.
Multi Drug Therapy became available in 1995 worldwide,
at no cost. More than 16 million patients have been treated with MDT over the past
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.
The Rufiji District in Tanzania is one such area where
the disease is considered endemic.
Abdallah Nguyu, a social worker and leprosy advocate, works as the leprosy centre manager in a small village within the Rufiji District. His work is funded by the Rufiji Leprosy Trust and is necessary for the continued support to those impacted by the disease.
In the developed world, leprosy is merely a biblical
reference to a time long past. However, in Kindwitwi and for most in Tanzania,
leprosy is a reality.
“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 came from different areas of Tanzania to be cured and cannot return to
their families,” Mr Nguyu explained.
“It is a real disease despite what people might think.
It is caused by bacteria, just like any other disease. Before the 1980’s there
was no proper cure. Now, you can catch leprosy and be treated and cured.
“We still go to the villages around Kindwitwi and give
medication to leprosy suffers, but education has changed things. People with
leprosy can still work and have lives and families.”
The disease begins for most with skin patches across
the body. These patches carry no sensation for sufferers. Often, the disease
will go undetected for years and those infected with it will lose toes and
fingers as the nerves become more damaged.
Salima 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.
She receives full time care from the leprosy centre in
the village and has a caretaker who feeds, bathes and clothes her daily. She is
a victim of the stigmatisation surrounding the disease.
There are many in the village who have been separated
from their families because of the disease. Saidi 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.”
The centre in Kindwitwi village works closely with the national Leprosy and TB programme, who aim to provide medication, funding and support to patients and their families.
Salumu is the village’s leprosy representative and he
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 the debilitating side effects of the disease. The Rufiji
Leprosy Trust paid for Salumu's training enabling him to become a specialist
shoemaker. The Trust also provides funding to the village NGO which allows him
to continue working in this capacity.
“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 have the shoes. I make my shoes according to the individual disability.”
Athumani is a fulltime care patient and receives the
shoes from Sazuma. He is also involved in the awareness campaign the village
aims to promote.
“It was a long time ago when I got sick. I heard about
the treatment available here, so I travelled on my own,” Athumani said.
“I am happy now because I have been cured and my family
are not sick.”
The stigma surrounding leprosy has allowed the disease
to spread throughout the district. People fear social exclusion and some are
even ostracised from their communities and families.
Abdallah Nguyu and his colleagues are desperate to
abolish the stigma.
“We try not to accept any more patients into the
village. If we continue putting people with leprosy together in one place, we
are actually increasing the stigma ourselves.
“Standard of life plays a large role in contracting
the disease. Compared to Africa or India, Europe has few leprosy cases. Poverty
contributes to leprosy. It is a vicious cycle,” Mr Nguyu added.
There is a certain sense of hopefulness in the village
and indeed the entire district. 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. 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,” he said.
His own children are free from the disease and have stayed
in the village throughout their lives, even establishing their own shops and
However positive the villagers may appear, the fight
to eradicate leprosy entirely by 2020 remains a difficult and often tedious
“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
shoemaker Sulumu have travelled to four villages to spread awareness of the
disease. This included travelling from house to house in these often isolated
villages and diagnosing people.
A lack of understanding, especially from those in very
isolated and impoverished areas of the Rufiji District, has made it difficult
in some cases for people to access the correct treatment for the disease.
This serious lack of education is an issue that Mr
Nguyu and his team in Kindwitwi aim to tackle.
“In the future, I would hope to see all leprosy
patients cured and living independently with no assistance,” he added.
For now, however, it seems the fight against leprosy
must centre on awareness and treatment and the knowledge that leprosy is indeed
a disease and indeed curable.
Photo credits: Eleanor BrennanClick to read full story
Our Trustee Sarah Feather writes:
Over the past thirty years the Rufiji Leprosy Trust funding has provided many educational opportunities for people living in Kindwitwi and villages nearby. Thanks to the generosity of our donors Salum had his specialist shoemaker course funded and our Centre Manager was supported on his Social Work Course.
In addition to funding the on-going running costs of the Kindergarten, we have agreed to support several students to enable them to further their studies. The relatives of these students contribute what they are able, whilst the Rufiji Leprosy Trust provides additional funding to ensure all fees are paid.
Kirum is a student from Nyanda Katundu village, he performed very well at secondary school and secured a place on a Human Resources Certificate Course in Dodoma. When he finishes his studies, he hopes to secure a place in Government Employment.
Rajabu achieved good grades at O-Level and is now being supported to study Chemistry, Biology and Gegraphy A-levels at Utete Secondary School. Acheni, pictured here in one of her lectures, is now in her second Year of an Electrical Engineering course at Dar es Salaam University. RLT supports her with a grant to cover a proportion of her tuition accommodation and living cost fees.
Rukia is being supported on a secretarial skills course so that she can secure an administrative job. She will then be able to help her family with the expenses they incur providing care for her disabled brother.
Two further students have just completed their 4th Year and are awaiting their exam results, which will be due out in the new-year; we will keep you informed of their progress.
We wish all our students success in their studies. Thanks to your donations RLT can continue to offer support to the young people in the village and help them achieve the goals they aspire to.
We would like to take this opportunity to thank you for your continued support for and solidarity with the community in Kindwitwi. On behalf of all the Trustees and the team in Kindwitwi we wish you a very Merry Christmas and a Happy New Year.Click to read full story
Salum, the village shoemaker shares with us the latest leprosy updates and news from the village.
Greetings to you all and we hope that you are keeping well. Let me start with leprosy news.
There was one patient detected in this quarter. He was a male, came from Kibiti with MB type of leprosy. A patient was self-reported, then he started the treatment.
Sadly the disease had already progressed to disability grade 2 because he had wounds to the soles of the feet. His name is Saidi.
Here you can see Dr. Nnally checking the patient’s eyes when he reported at the DTLC’s office.
Siasa Primary School graduation
Education is a very important in our community. We support and celebrate the achievements of the young people. We do this is by celebrating our students when they graduate to a new class.
Recently we celebrated the graduation of four students from Kindwitwi, one of them was my son called Rashid.
According to results given/announced, three of them were passed and one was failed.
I am happy that Rashid passed and is ready to join Secondary School Form One next year.
The guest of honour during the graduation was the District Commissioner.
Visitors to the village
In October, we were visited by Justine and his wife. Justin works with an organisation call Better Lives. He came to the village to see the progress of the Kikundi Cha Mafanikio (KCM).
Better Lives provides funds to support activities such as production vegetables for the kindergarten.
Justin and his wife helped the cook to clean the vegetables to be ready for cooking at kindergarten.Click to read full story