Book launch ‘The Living Death: the struggle with a long-forgotten disease’

January 26, 2017

World Leprosy Day 2017

The Living Death: the struggle with a long-forgotten disease

  • Moving account of a young woman’s battle with leprosy
  • An ancient disease of poverty and stigma

Geneva, 26 January 2017 Leprosy campaigner Evelyne Leandro has today launched the English version of her book The Living Death: the struggle with a long forgotten disease.

Evelyne, originally from Brazil, moved with her German husband to Berlin in 2010. Young, spirited and educated, she soon learned how to speak German, made friends and started a new job.

In January 2012, Evelyne discovered some unusual patches on her arm, knee and lower leg. After many fruitless examinations, she was finally diagnosed with the long-forgotten disease, leprosy. Written in a diary format, Evelyne has summarised her 500 day odyssey, starting with the first symptoms and finishing at the end of the treatment when she finally overcame the disease. She conveys pain, fear and uncertainty, but also joy and hope for the future to the reader.

Evelyne says, “my intention in writing this book was to provide some deep insights into what leprosy means for the hundreds of thousands of people worldwide suffering from this and other poverty-related diseases. The first ten months of treatment were particularly painful. My whole body hurt. My left arm was more sensitive than usual and my right knee was swollen. I had pains in my stomach and back, an inflamed throat, a headache and vision disturbances!”

Mathias Duck, member of ILEP’s Panel of women and men affected by leprosy said “Evelyne Leandro is a remarkable and courageous woman. Many people affected by leprosy are reluctant to tell their story because of the stigma that is still associated with it. I see this book as a tremendous contribution to raising awareness about leprosy and it will help to create a more informed, compassionate and just environment for other people affected by leprosy.”

Leprosy is a curable disease and it can be treated with a course of multidrug therapy, MDT. Since the introduction of MDT in 1980s, over 16 million people affected by leprosy have been cured. However, due to ignorance, misunderstanding, indifference or fear, millions of people cured of leprosy still suffer from the stigma associated with the disease and in addition, great obstacles to their social integration before and after cure. The stigma of leprosy continues to be one of its most persistent and damaging features, and it can stop those affected from coming forward for early and effective treatment.

World Leprosy Day is celebrated on the last Sunday in January each year to coincide with the anniversary of Mahatma Gandhi’s death on 30 January 1948. Gandhi worked tirelessly to help those affected by leprosy. The purpose of World Leprosy Day is to raise the awareness of a disease that many people believe has disappeared.

If you would like to speak Evelyne about her book or her experience of leprosy, she would be happy to hear from you. She speaks Portuguese, German and English. Email Evelyne.