Escritas de si e de uma doença: um estudo sobre produções de caráter biográfico e autobiográfico de ex-portadores do mal de Hansen / Writing about oneself and a disease: a study on biographical and autobiographical work by survivors of Hansen's disease

Resumo Este artigo investiga alguns dos elementos de representação em produções literárias baseadas em memórias de ex-portadores de lepra (atualmente denominada hanseníase) que viveram o regime de isolamento, em vigor no país até meados da década de 1980. Além do estigma de maldição que a lepra já carregava, a medida causou inúmeros traumas àqueles que sofreram a exclusão social e a perda de seus vínculos afetivos. Essas experiências resultaram na escrita de autobiografias, biografias ou, ainda, romances inspirados nas memórias da vida em isolamento. Busca-se, portanto, compreender, a partir do estudo de alguns desses registros, como essas pessoas se viam e como viam a doença e os locais de isolamento.

Abstract This article investigates some elements of representation in literary work based on memoirs of people with Hansen's disease (formerly known as leprosy) who lived the confinement forced upon people with this disease in Brazil until the mid-1980s. In addition to the stigma associated with leprosy, this policy traumatized patients, who faced social exclusion and loss of relationships; these experiences yielded autobiographies, biographies, and even romances inspired by their memories of life in isolation. Our objective is to understand, through the study of some of these records, how these people saw themselves and how they viewed the disease and their places of confinement.

[Hansen's disease in the laboratory]. / A hanseniase no laboratório.

A physical doctor with a PhD in Pathology, Euzenir Nunes Sarno studies the immunology factors of Hansen's disease, one of the oldest chronic infections and that is an exclusively human disease. Staff member of an ambulatory that has become a reference on the disease in Brazil with 220 to 250 new patients per year, Euzenir emphasizes that the fact one cannot cultivate Mycobacterium leprae brings about some everlasting questions in relation to the transmission of and the sensitivity to the disease. There are also many epidemiology questions that remain unanswered. Estimates show that, among those who have contact with multi-bacilli patients, 90% are infected but only about 8% get sick. The high infection rate of those who live with multi-bacilli patients but never fall sick shows that just a small number of individuals are sensitive to Mycobacterium leprae. This is one of the questions immunology has not been able to answer. Why do some people resist to it and some don't? The figures are even lower when compared to those who are in contact with patients that are paucibacillus-infected, i.e. a manifestation of the disease with few bacilli. Hansen's disease is known as a skin malady. But, according to the specialist, its first damage is to the nerve, when the area becomes insensitive. Besides damaging the sensitive skin nerves, the disease can lead to motor disability and irreversible deformities, which sometimes lead to the amputation of limbs and protruded parts of the body. Mycobacterium leprae was one of the first pathogenic bacteria whose genome sequence has been entirely mapped. Only now we have the capacity to have more precise assessments. The disease is not inherited, and only in 1986 health services in Brazil began to take the responsibility for both the disease and its patients. During the twenty-year military dictatorship the country underwent, the health system was dismantled. In 1991, the one-year treatment with three drugs - Dapsone, Rifanpicine and Clofazimine- was introduced in our country. Just 30% of the cases get to negative results after the treatment. according to the interviewee, whereas tuberculosis is a highly virulent multi-bacilli disease, leprosy bacillus is not virulent, is a 'lazy' germ at the end of its evolutional process. One third of its genome does not work.

[A panorama of Hansen's disease: present status and perspectives]. / Panorama sobre a hanseniase: quadro atual e perspectivas.

The interviewee speaks about the endemic disease, which at present contaminates 4.4 out of ten thousand inhabitants in Brazil, the country with the second highest number of patients. When Tadiana speaks about the Brazilian participation in the program launched by the World Health Organization, she explains that WHO's objective is to extinguish Hansen's disease on the planet until 2005. However, she says that Brazilian main goal is to reduce the occurrence of the disease to less than one case per ten thousand people. In our country, the structure and the organization of this program, which comprehends the education and specialization of professionals in order to guarantee early diagnoses, as well as patients' follow-up during treatment, is developed by Sistema Unico de Saúde (SUS) and has been implemented in all the states of the federation. The chemotherapy treatment lasts about a year, when taken seriously. In many cases, the disease comes back a while later. Tadiana comments on the differences of the disease according to the different regions of the country. It has been extinguished in the South,whereas the rates in the North and Central East regions almost reach endemic peaks. Working close to patients and ex-patients associations, first as a nurse and later in the implementation of policies for Hansen's disease issues, Tadiana Alves Moreira stresses the importance of early diagnoses, which avoid the physical damages and deformities that take place in the advanced stages of the disease, so reducing the stigma over the diseased.

Vida de leprosa: the testimony of a woman living with Hansen's disease in the Peruvian Amazon, 1947.

This is the narrative of a patient made before, during and after being incarcerated in an agricultural colony in the Peruvian Amazon. In a vivid style, it narrates the decay of the body, the stigma and the compulsive segregation, as well as the hope for a better life. It is the perspective of a patient, something that is difficult to find when researching the history of health. The original publication was possible thanks to the German physician Maxime H. Kuczynski-Godard and thanks to the Institute of Social Medicine of the University of San Marcos that was directed by the professor of hygiene Carlos Enrique Paz-Soldán. We have used this publication for this transcription. Kuczynski-Godard was a German medical doctor that arrived in Peru in the mid 1930s and organized valuable activities in the Peruvian jungle as a part of an effort, which eventually failed, of the Peruvian State to colonize, or really to "civilize" the Amazon.