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People Affected by Leprosy in Latin America Unite for Their Rights and Their Voice

Family photo of part of the 111 participants in the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen
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Family photograph of a part of the 111 members in the First Latin American and Caribbean Meeting of Organisations of People Affected by Hansen’s Disease, on the steps of the Morisco Palace, the headquarters of the Oswaldo Cruz Basis, which hosted the three-day assembly in Rio de Janeiro, Brazil. Credit score: Mario Osava/IPS

RIO DE JANEIRO, Mar 14 2019 (IPS) – With the choice to found a regional coalition to promote rights and larger participation in nationwide and international forums and selections, the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s disease, popularly recognized – and stigmatised – as leprosy, got here to an end.

The ultimate session of the assembly, on Mar. 14, permitted 40 of the 58 proposals introduced by the 111 members in three days of debates at the headquarters of the Oswaldo Cruz Basis, a renowned scientific, medical and epidemiological research centre in Rio de Janeiro, Brazil.

José Picanço, 46, separated from his household and taken as a newborn to an orphanage as a result of his mother and father have been recognized with the illness in 1972, is a type of affected whose right to reparations stays unfulfilled. His three siblings are in the same state of affairs.

When the household was reunited eight years later, the father turned his back on the youngsters. The mom took them in, but died shortly afterwards. “I only lived with her, a saint, for five months,” Picanço recalled, barely managing to hold in his tears while giving testimony on the assembly.

“Humiliated as the children of lepers, suffering bullying and sexual harassment, many of the other children who were with me at the orphanage fell into drug abuse and alcoholism. It was a holocaust,” he stated. “I hit my brother on the head, not knowing he was my own brother.”

“Of the 15,000 to 20,000 children separated from their families, more than 80 percent suffer from depression,” stated Picanço in an interview with IPS, detailing a few of the injury triggered by the previous rule of segregating the individuals then referred to as “lepers”.

Obligatory isolation was widespread all over the world, throughout totally different historical durations, and continues in some nations, although it’s recognized that the illness is curable and that patients cease to be contagious shortly after beginning remedy.

Formally, Brazil abolished this apply in 1976, although it truly lasted 10 more years. Its direct victims have been compensated starting in 2007, however their youngsters weren’t. The activists gathered in Rio de Janeiro referred to as for working for policies of reparations for youngsters separated from their families.

Their complaints and proposals shall be taken to the World Congress of associations of people affected by leprosy in Manila in September, which will even receive contributions from Africa and Asia, permitted at current comparable regional assemblies.

“The goal is to form a large network of activists, to strengthen the movement” for the eradication of the illness and for care and reparations for those affected, stated Kiyomi Takahashi of the unbiased Nippon Foundation, which is driving this international strategy of debate and cooperation.

The meeting in Rio de Janeiro fostered “a high-level dialogue, the result of Morhan and Felehansen’s long history of activities,” the Japanese professional informed IPS, referring to the Movement for the Reintegration of People Affected by Hanseniasis (Morhan) in Brazil, and the National Federation of Entities Affected by Leprosy or Hansen’s Illness (Felehansen) in Colombia, the two organisers of the regional meeting.

Brazilian activists José Picanço (front) and Evelyne Leandro testified about how Hansen’s illness affected them during a Latin American and Caribbean meeting in Rio de Janeiro. Picanço was separated from his mother and father once they have been recognized with leprosy when he was born in 1972 and was solely reunited with them eight years later, shortly earlier than his mom died. Leandro wrote a guide concerning the difficulties of being recognized with the illness in Germany, the place she lives. Credit: Mario Osava/IPS

“Morhan is my safe haven, to preach that separated children should be heard and have opportunities,” stated Picanço, who explained that he joined the movement in 1992. Right now he provides talks on the direct and indirect results of the stigma still surrounding the illness, that is suffered by those affected and their households.

A blessing

The illness “was a blessing for me,” Isaias Dussan Weck, 50, the vice-president of the Colombian affiliation Felehansen, informed IPS with out hesitation.

The analysis in 2006 destroyed him, he stated. He lost the will to work or to exit, he let his enterprise of supplying cleansing merchandise to corporations go bankrupt, he even contemplated suicide. He ignored the stains on his body that didn’t forestall him from working and touring, until they unfold to his face, and he observed that elements of his body have been going numb.

He acquired remedy and was cured, left with solely slight numbness in one arm and pains in his left leg.

But all the things went badly for him till he was invited to conferences with other individuals affected by leprosy. “I began to understand, when I heard their testimonies and tears, why a young black girl with severe disabilities said that leprosy was a blessing to her,” Dussan stated.

Activism for the good thing about these affected, towards the stigma and the injury triggered by the illness, in the affiliation of the division of Huila, in southwestern Colombia, allowed him “to gain new meaning for life and to understand and practice love for my neighbour.”

“Helping and seeing a patient’s life improve is a wonderful emotion, and you help other people want to live,” he concluded. That new passion led him to Felehansen, the place he took on leadership roles in the federation.

Irma Romero, 42, president of the Nuevo Amanecer Basis in Barranquilla, on Colombia’s northern coast, had an identical experience. Her lengthy odyssey to a specialist’s analysis 5 years ago reveals the medical system’s shortcomings in relation to detecting and treating the illness, also called hanseniasis, which continues to be seen by many as “a divine punishment.”

Romero stopped working in the textile business as a consequence of disability and melancholy. “I couldn’t even walk,” she recalled. “I even denied God,” she informed IPS.

Colombian activist Irma Romero, a native of the city of Barranquilla, sitting on the bus that transported the participants of the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease, held Mar. 12-14 in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Colombian activist Irma Romero, a native of the town of Barranquilla, sitting on the bus that transported the members of the First Latin American and Caribbean Meeting of Organisations of People Affected by Hansen’s Illness, held Mar. 12-14 in Rio de Janeiro, Brazil. Credit score: Mario Osava/IPS

Remedy utilizing medicinal herbs, self-medication, rejection by family members, attempts to separate her from her two youngsters and abandonment by her husband all shaped part of her struggling, which didn’t finish together with her remedy and remedy.

The one everlasting physical effects are numbness in her palms and ft, and sciatic nerve ache. But the discrimination continued.

“My life changed when I joined the association of affected people” 4 years in the past, she stated. “There I found people who had things in common with me, and a newfound love of my neighbour that I did not feel before,” stated the activist, who turned president of the Basis the following yr and reconciled with God.

Her foundation presently has 60 members. In Barranquilla she estimates that there are “about 200 affected people, but many more are hidden.”

The inspiration is among the 10 associations that make up Felehansen, eight of which name the disease hanseniasis or Hansen’s illness, certainly one of which makes use of the time period leprosy, and one other of which refers to disabled individuals and is made up of sufferers who acquired a really late analysis.

The World Well being Organisation (WHO) defines leprosy – the term it uses – as an infectious and persistent disease “transmitted by air through droplets from the nose and mouth, during close and frequent contacts with untreated cases.” It additionally specifies that leprosy is “one of the least infectious diseases.”

WHO studies that in 2017 there have been 211,009 new instances worldwide, in accordance with official knowledge from 159 nations. That quantities to 0.3 instances per 10,000 inhabitants, which suggests it classifies as having been “eliminated,” based on WHO standards.

Change of identify: another suggestion

Proposing hanseniasis because the official identify for the illness is likely one of the proposals that came out of the Latin American meeting, headed by Brazil, which has already adopted it, even prohibiting the point out of leprosy in the well being system since 1995.

They are totally different concepts, as a result of leprosy and leper have very destructive connotations of “dirt, plague, impurities and divine punishment,” strengthened by quite a few mentions with that ethical burden in the Bible, argued Faustino Pinto, one among Morhan’s national coordinators.

However the activists from Colombia will not be satisfied. “People only know leprosy, they don’t know it’s Hanseniasis. To explain the issue to the population, you have to mention leprosy,” argued Romero.

“It will be necessary to educate the new generations about the concept of Hansen,” the Norwegian physician Gerhard Hansen who discovered the bacillus that causes the illness, because adults are usually not more likely to overlook the stigma, stated Dussan. “It’s harder to unlearn than to learn,” he added.

Another proposal of the Latin American Assembly is to extend the current Committee for Assistance to Brazilian Immigrants Affected by Hanseniasis to all Latin People and individuals from the Caribbean, in addition to extending it to other regions.

The reference point in that is Evelyne Leandro, a 37-year-old Brazilian who has lived in Germany for nine years and had plenty of difficulties getting recognized with the illness in a country the place it is extremely uncommon and the place only a few docs are accustomed to it.

She was helped by her mother’s suspicion, woke up in Brazil by an outreach marketing campaign on the illness, and by the Institutes of Tropical Drugs in Germany.

Her case and these of other immigrants in Europe are recounted in her e-book “The Living Death: the struggle with a long forgotten disease”.


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