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Lupus Q&A Revised and Updated, 3rd edition: Everything You Need to Know (Englisch) Taschenbuch – 2. Dezember 2014


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Über den Autor und weitere Mitwirkende

Robert G. Lahita, M.D., Ph.D., is the chairman of the Department of Medicine at Newark Beth Israel Medical Center. He has been internationally recognized for his clinical research in systemic lupus erythematosus and autoimmune disease, and is the recipient of numerous research grants from the Primus Foundation, the Lupus Foundation of America, and the National Institutes of Health. Dr. Lahita lives in Newark, New Jersey.

Robert H. Phillips, Ph.D., a clinical psychologist, is the director of the Center for Coping on Long Island, NY. He is internationally recognized for his work helping people with chronic medical problems, is the author of more than 35 books, and has presented at meetings all over the world. A former board member of the Lupus Foundation of America, he is on the national board of the American Autoimmune Related Diseases Association.

Leseprobe. Abdruck erfolgt mit freundlicher Genehmigung der Rechteinhaber. Alle Rechte vorbehalten.

Original Foreword

It is my great pleasure to write a foreword to this book, dedicated to the patient with lupus and written by Dr. Robert Lahita, who has done so much for my family, in conjunction with Dr. Robert Phillips.

Autoimmune disease, a topic that is very important to my family, can strike anyone at any age. One of the great mysteries of our time, this category of illness inflicts psychological and physical damage upon its sufferers. Systemic lupus erythematosus, in particular, has caused untold devastation and suffering for lupus patients and their families. It is also a disease that is harder to diagnose than it is to pronounce. This is why it is important to have a book like this one—solid and comprehensive, yet simple and direct. It answers questions for patients, for their families, and perhaps even for their doctors. The authors have taken particular aim at the public interest in this disease that affects women most, but has an impact on people of every gender, of every age, and of every race, and in doing so have given some attention and interest to a disease that affects many but about which so little is known. I know, for this disease has touched, and will doubtless continue to touch, the members of my family.

George joins me in wishing all patients and their families well and in hoping that Lupus Q & A: Everything You Need to Know will help many people to understand and cope with this dreaded disease.

—BARBARA BUSH

Former First Lady

Houston, Texas

Preface

There is no more difficult disease to diagnose, understand, or treat than the disease called systemic lupus erythematosus. This may be because lupus is not one disease but many diseases grouped under one heading. It may also be because the disease can present itself to both physicians and patients in mysterious ways, throwing them off the track, leading them to think of other more common illnesses, and eluding standard diagnostic methods. Whatever the reason, lupus is complex and problematic.

This book was designed to answer the many questions you may have about this disease and its impact on your life. Many of the questions are based on the countless numbers of patients who enter our clinics and offices daily with long lists of questions, the letters that arrive weekly in the mail seeking answers, the questions we hear at conventions or meetings, or the sad phone messages that ask for help because “my doctors don’t understand the disease.” This is not a companion to any textbook. It is written strictly for patients and is based on their needs and questions. The goal was not to educate doctors with the material in this book (although many will find it helpful) but rather to address patients’ very real questions. We also realize that despite the dozens of questions answered in the book, certain areas may have been inadvertently overlooked. However, our goal was to address questions that, according to our experience, are most on the minds of our patients.

Ironically, the disease lupus seems to have gotten more complex, not less, over the years. New knowledge about the immune system and its workings has led to other autoimmune diseases being added to the roster of problems that need resolution. For example, because of difficulties in classification, a disease such as autoimmune phospholipid syndrome is often given the label “lupus.” Some physicians label it lupus in order to give the disease a billing code acceptable for insurance reimbursement! Diseases such as autoimmune phospholipid syndrome have resulted in swelling numbers of lupus patients. The Lupus Foundation of America has estimated that some 2 to 2.5 million Americans believe that they have lupus, and that some 86 percent of Americans have heard of the disease. While these are staggering numbers, one must be cautioned to remember that they may reflect the fact that many illnesses that are not lupus are being called lupus. Hopefully, this book will help to clarify the reasons that the numbers of people with lupus are increasing.

Last, a bit of history is necessary to allow readers to understand this disease and its past. Let’s review the “timeline” of lupus.


   • Lupus got its name because it was originally thought to represent the wounds that resulted from being attacked by a wolf. The trademark “butterfly rash” was thought to be from the bite or scratches of a wolf.
   • This butterfly rash on the malar part of the face (above the cheeks) was first mentioned in the thirteenth century.
   • The actual term lupus erythematosus was first mentioned by a fellow named Cazenave in 1851.
   • There was much confusion regarding the diagnosis of lupus until well into the twentieth century. It was often confused with tuberculosis, disseminated gonorrhea, and many skin disorders.
   • Only in the 1930s and 1940s did pathologists look at organs such as the kidneys and skin and realize that common changes in these organs had certain similarities in patients with lupus. Together these formed the typical aspects of lupus.
   • Immunology was in its infancy in the 1930s and 1940s, and the classical description of antibody structure was not to take place for some decades. No one knew the mechanism through which lupus could so globally damage so many organs of the body. No one really understood this newly described illness, which counted rash, kidney failure, and sun sensitivity among its list of characteristics.
   • In the 1940s came the association with the false-positive test for syphilis, the discovery of the LE cell, and the idea that these phenomena might have something to do with “blood proteins.” These proteins were later called antibodies, and it was suggested that they might be reacting with normal tissues. All of these discoveries were important in the understanding and diagnosis of lupus.
   • Coincidentally, the discovery of cortisone in 1948 by Philip Hench provided the first and greatest therapy for lupus.
   • The 1950s brought the fluorescent antinuclear antibody assay, an important test in the diagnosis of lupus, and the discovery of autoantibodies such as Sm and RNP. These autoantibodies form the basis for our understanding of the disease process of lupus—how we diagnose it and a small bit about how the disease affects the body. In addition, the 1950s brought about important insight into the genetics of the disease. All of this added significantly to knowledge about lupus.
   • Since the 1950s, much research has focused on the following areas: molecular genetics (in order to learn more about the immune response), hormones and their importance, and, more recently, the development of several new drugs. Although lupus research has come far in the past twenty-five years, it will take an understanding of the cause of the disease—currently unknown—in order to develop a targeted cure.
   • In the early 1980s a new condition called antiphospholipid syndrome was described that in many cases is inexorably linked to lupus. It is troubling because it causes bleeding and clotting. It is usually a condition of “sticky blood” that can result in blood clots in the lungs or the brain. The addition of factors concerning the syndrome resulted in a revision of the criteria for the classification of lupus.
   • In the first decade of the twenty-first century came a number of significant advances, which are detailed in this book. These include the use of newer biological agents...

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HASH(0x9ba67f60) von 5 Sternen A DECENT LUPUS BOOK 13. Januar 2015
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this book has a lot of merit and information, however, for me, the q & a format gets tedious.
HASH(0x9bc3f8d0) von 5 Sternen Very helpful & informative 28. Juni 2016
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Very helpful for care-giver as well.
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