A Leprosy Advocate, Who Was Once a Patient, Talks About Stigma, Empowerment, and Treatment
In 2010, Mathias Duck was working at a hospital in his native Paraguay when he began to feel tingling in two fingers of his right hand. As a pastor at the hospital, Mathias was deeply familiar with the symptoms of leprosy – the hospital treated many people affected by the disease – and he knew that he needed to be checked out.
“When I got the diagnosis (of leprosy), it hit me like a ton of bricks,” he said in a recent conversation with The Task Force’s David Addiss, MD.
Mathias was here at the invitation of the Global Partnership for Zero Leprosy, a program at The Task Force.
Around 95 per cent of people will never develop leprosy because their immune systems can fight off the bacteria. But Duck was among the very few who contracted the disease. He was quickly cured of the disease with no lasting physical damage, but he says he was afraid to share his diagnosis with colleagues and friends because of the stigma.
“I learned firsthand from people who experience leprosy that it could mean that your spouse could abandon you; that you could lose your job; that schools would not admit your children,” he said. “I did not want to be viewed as that guy who now has leprosy.”
Despite understanding the roots of stigma and how misplaced it was, it took him a few years to talk openly about it. “There is this hurdle of fear before you tell someone about it because you make yourself vulnerable.”
Now a fierce campaigner for people affected by leprosy, Mathias is a part of an advisory panel of the International Federation of Anti-Leprosy Associations (ILEP) that helps shape policy and advocacy in the areas of diagnosis and treatment; destigmatization; and elimination.
In this video, Mathias talks about how a deeper understanding of the disease’s impact can result in better interventions.