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Living with Lupus

Women and Chronic Illness in Ecuador

By Ann Miles

Publication Year: 2013

Enriched with ethnographic stories of Ecuadorian women who struggle with the autoimmune disorder, lupus erythematosus, this book is one of the first to explore the meanings and experiences of medically managed chronic illness in the developing world.

Published by: University of Texas Press

Series: Louann Atkins Temple Women & Culture Series


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p. C-C

Title Page, Copyright

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pp. i-iv


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pp. v-vi


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pp. vii-xii

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1. Introduction

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pp. 1-15

In 2000, Rosa Quitasaca, an Ecuadorian woman of “humble” rural origins living in the third largest city in the country, fell seriously ill. Rosa, who was in her forties, was known to be emotionally sensitive and physically delicate, and she oft en complained about the sadness and exhaustion she felt because of the multiple trials and burdens in ...

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2. Cuenca, Lupus, and Chronic Illness

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pp. 16-37

It is unclear to me how much Rosa really understands about lupus. She knows, of course, from personal experience, that it is debilitating, that it can run in families, and that it can sometimes be deadly. Moreover, although she does not always do it, she knows that she is supposed to take care of herself, which means taking her...

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3. Health Care in Ecuador

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pp. 38-56

By the time Rosa was diagnosed with lupus, she had been very sick for several months. During her illness she was hospitalized a number of times, and her family had already mistakenly been told that she had a range of serious health problems. She would sometimes get a litt le bett er aft er some medical intervention, a blood transfusion, ...

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4. Liminality

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pp. 57-78

One of the unexpected outcomes of Rosa’s lupus is that her husband Lucho and I have become much better friends. He and I met over twenty years ago when I was in Ecuador for the first time, and at the start we were somewhat wary of one another. I knew Rosa for several weeks before I met Lucho, since he was a long-distance bus driver and was often gone for days at a time. Before I met him, Rosa had told ...

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5. Loss

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pp. 79-99

By 2004 Rosa’s health had stabilized, and she was feeling bett er physically and psychologically. She was no longer “afraid of everything” and “living inside her own head.” She was also relieved to be spending less money on doctor’s visits and medications. Finally, she could begin saving for other things. Her family life had returned to...

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6. Suffering

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pp. 100-120

When I visited with Rosa eighteen months after she was diagnosed with lupus, I thought she looked terrible. Her face was swollen and distorted by the steroid use, and it had a distinctively ruddy color. She moved very slowly and cautiously, shuffling her feet as she walked, and she seemed to lack interest in, and have difficulty...

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7. Transformation

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pp. 121-141

For those with few economic resources in Cuenca, the municipal cemetery is the only place to bury the dead. Although the Catholic Church now offi cially accepts cremation under some circumstances, the long church history of banning cremation, combined with its continued ambivalence towards the procedure, has made Ecuadorians, ...

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8. Living with Lupus

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pp. 142-154

When I last saw Rosa, she was doing r emarkably well. She had moved to the new two-story home that she was still in the process of building, and she enjoyed cooking in her wellequipped kitchen and gardening in the yard. She planted several fruits trees, has a small patch of herbs for cooking and making teas, and has seemingly...

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pp. Image 1-Imaage 7

A view of Cuenca’s historical architecture fr om the Central PlazaTh e Social Security (IESS) Hospital in Cuenca (Hospital Regional José Carrasco Th e Ministry of Health Hospital in Cuenca (Hospital Regional Vicente Corral Moscoso)Th e upscale private hospital and offi ce pavilion Consultorios Monte SinaiOngoing construction of the private Hospital Universitario del Río (photo fr om 2007)...


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pp. 155-162


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pp. 163-176


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pp. 177-184

E-ISBN-13: 9780292744660
E-ISBN-10: 0292744668
Print-ISBN-13: 9780292744653
Print-ISBN-10: 029274465X

Page Count: 204
Illustrations: 10 b&w photos
Publication Year: 2013

Series Title: Louann Atkins Temple Women & Culture Series