According to a story from the Inter Press Service, the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease has just recently concluded. Hansen’s disease, also known as leprosy, still faces a great deal of harmful stigma around the world, and Latin America is no different. Despite the challenges that this rare community face in this region, the participants in the assembly left the event with a new sense of unity and purpose.
About Hansen’s Disease
Hansen’s disease, more widely known as leprosy, is a rare, long term infectious disease. This illness has been known to civilization for thousands of years; this has unfortunately led to the development of deeply rooted cultural stigma against patients with Hansen’s disease, primarily because of an unfounded belief that the disease can spread incredibly easy and because of the disfiguring effects of the disease if it remains untreated. The disease is caused by infection from the bacteria Mycobacterium leprae or Mycobacterium lepromatosis. Symptoms of Hansen’s disease include numb, discolored patches of skin, numbness in the hands and feet, nerve damage, and tissue loss, which can lead to deformations of the hands, feet, and joints. Symptoms may not appear for many years after the person becomes infected. The disease is solely spread through contact with fluid from an infected person. Multidrug therapy can resolve symptoms in most people and relapse is incredibly rare. To learn more about Hansen’s disease, click here.
Dispelling Irrational Fears
The country of Brazil officially abolished the practice of separating people with leprosy from their families in 1976, but poor enforcement meant the practice continued for years after. Children born to parents with the disease were often torn away from them and placed into orphanages. José Picanço, who is now 46, was one such child who is still seeking reparations from the Brazilian government.
Many patients who were stigmatized for their illness in the past are turning to activism for Hansen’s disease patients as a source of purpose and advocacy in their lives. A big goal for the conference was to find ways to dispel the stigma that still surrounds Hansen’s disease. Part of this process will be rejecting the old and commonly used terms for the disease and its patients: leprosy and leper. The assembly agreed to use the term hanseniasis to refer to the disease instead.
Still, it will be difficult to educate the general public about the disease using a different name. However, it could make a difference in how future generations understand it.