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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy



Evelyne Leandro, a Brazilian woman living in Germany, had the urge to write a book. After seeing a nice-looking diary in stationery shop window in Berlin, she hit upon the form it would take: the diary of woman who has to spend a few days in hospital, told from the perspective of the patient. Little did she realize that she would soon be writing about herself.

The Living Death: The struggle with a long-forgotten disease is an intensely personal account of the physical, mental and emotional challenges of being diagnosed and treated for leprosy. Adding a layer of complexity to Leandro’s story is the fact she is in a foreign country, where leprosy is rare, and has to deal with medical staff in a foreign language. “I had to eliminate the prejudice that a foreign woman without perfect German could not be intelligent,” she writes.

The author is a go-getter, so to have her life and job disrupted by her disease hits her hard. The frustration and despair she conveys at not being able to live on her own terms is a gauge of how much she wants to achieve in life. Yet over the trials and tribulations that the diary format captures so unflinchingly, she copes with the pain and setbacks that accompany her treatment and seeks to find meaning in her illness.

In this, the author has the support of her German husband and step children, and wonderful friends and family who offer love and advice in emails she includes in this account. “It’s a small disease for a great woman!!” one writes.

Articulate, analytical and passionate, Leandro is particularly insightful about the toll that the disease and the different medications take on her. “The thalidomide deadens me and the other drugs corrode my stomach and gullet. My body hurts from straining. My knee and the inflamed nerves are swollen though the cortisone. I am ill either through leprosy or the drugs against it.”

It is a grueling journey, but after 495 days she is able to write: “The disease is no longer the center of my life. I’ve taken up command again. I’m back in my life.”