May 11, 2017
Mathias Duck, a member of ILEP’s Panel of Women and Men Affected by Leprosy, discusses the importance of including people affected in the fight against leprosy and other NTDs.
In 2010, Mathias Duck found out he had leprosy while working at the Hospital Mennonita Km 81 in his home country of Paraguay. He had only been working there for around ten months, so believes he contracted the disease long before.
He considers himself fortunate that he was “in the right place at the right time,” as he quickly received treatment and didn’t face many of the challenges that come with the disease; disability which can lead to stigma and discrimination. But he still internalised the disease and came to doubt himself. While working at the leprosy hospital he witnessed how others had been treated. At first it made him fear telling anyone.
But leprosy did not defeat him, rather, as he says, it gave him a purpose. “In all of this, I discovered a vocation. It gave me more direction, a very concrete sense of my life,” he explains. “I see that I have to work, put in my effort and fight for persons affected by leprosy, their families and their rights.”
As well as campaigning for people affected by leprosy in Paraguay, Mathias is a member of ILEP’s Advisory Panel of People Affected by Leprosy where helps to shape policy and advocacy towards achieving “Triple Zero“.
One of the main barriers he sees to changing perceptions of leprosy is the ignorance people have about the disease, and the warped views of those who suffer it.
“If I did tell people, I would have to explain a lot about the disease,” he recalls. The fact that it can be cured, that only around five percent of people are not immune, and that treatment is freely available; all are still unknown to many people, Mathias says.
In Paraguay, Mathias explains that this ignorance is still strong among the general public and even within the medical community. “In most places, health workers have a hard time knowing how to deal effectively with reactions to the disease.”
But he has seen some improvement, particularly when it comes to training. “I have seen some specific situations where the perceptions of a particular community changes,” he adds, proving that stigma and discrimination can be overcome.
“There is no reason to discriminate against a person affected by leprosy,” he continues. “It could be you, your mother, your child, your best friend who is affected.”
As an advocate for people affected, Mathias wants to see more influence and participation at all levels.
Addressing the final plenary session, focussed on what is needed to end NTDs, at the recent 2017 NTD Summit in 2017, Mathias stressed the importance of listening to the voices of people affected. He pointed out that people affected were severely underrepresented at the event, with only a few persons affected by NTDs at the four-day Summit.
“It’s crucial that people affected are represented. We should never be talking and deciding about people, without those affected having a say in it,” Mathias affirms.
He explains that when people affected are involved advocacy and effectiveness of services improve and stigma can be reduced, which is crucial to achieving Zero Leprosy. When people affected are given a voice, others can see beyond the disease and realise that those affected are just like everyone else. This can help to break down the false and popularised image of leprosy faster and more effectively.
Mathias hopes to see “many women and men affected by leprosy being empowered to find the solutions to ending leprosy at the community, municipality, national and the global level,” in the not too distant future.