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E-raamat: Scleroderma Book: A Guide for Patients and Families

(Professor of Medicine, Division of Rheumatology and Clnical Immunogenetics, University of Texas Health Sciences Center at Houston, USA)
  • Formaat: PDF+DRM
  • Ilmumisaeg: 01-May-2005
  • Kirjastus: Oxford University Press Inc
  • Keel: eng
  • ISBN-13: 9780199874538
  • Formaat - PDF+DRM
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  • Formaat: PDF+DRM
  • Ilmumisaeg: 01-May-2005
  • Kirjastus: Oxford University Press Inc
  • Keel: eng
  • ISBN-13: 9780199874538

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A guide for patients and the families of patients of this autoimmune disease provides information on managing the disease's symptoms and improving one's quality of life

The Scleroderma Book has long been considered the leading source of information for patients suffering with this disease. Now comes the Second Edition of this highly respected volume, extensively revised by Maureen Mayes, M.D., the leading authority in this field.
Writing specifically for patients and their families, Dr. Mayes draws on her extensive experience treating scleroderma to provide up-to-date, practical information that will help patients manage their symptoms and improve their quality of life. Dr. Mayes begins with an easily accessible description of the basic facts, distinguishing between the many manifestations of the disease, ranging from localized scleroderma (small patches of hardened skin, most common in children, which tend to clear up over time) to systemic scleroderma, which can attack the lungs, the kidneys, and the blood vessels, and can be life threatening. Equally important, she offers sympathetic and reassuring advice on matters that often concern patients, such as the best course of action for those who want children, what to do if the disease affects your sex life, and what you can do to help your doctor treat your illness more effectively. The book concludes with a good humored, frank discussion about how to cope, day in and day out, with an uncertain future--how to be a "person living with" scleroderma, not a "victim suffering from" it. The new edition has updated chapters on the genetics of scleroderma and on new treatments for complications of this disease.
Touching on virtually every aspect of this disorder, The Scleroderma Book provides a reliable source of information and reassurance for patients of any age and no matter how severe their form of the disease.
Endorsed by the leading national advocate group, The Scleroderma Foundation

Arvustused

"Dr. Mayes' book is the ultimate resource for patients and their families seeking to gain a better understanding of this complex disease. Her compassion and dedication for her patients is evident throughout the book, from her easy-to-understand description of scleroderma and its manifestations, to more personal subjects such as depression, lifestyle changes, and patient-physician relationships. She promotes further understanding by the use of case studies that patients can easily relate to. If education is the key to alleviating anxiety, making patients more effective partners in their care, and providing a more positive way of coping with scleroderma, then every patient, family member, caregiver, and friend needs this book." --Carolyn Weller, RN, Vice President Education & Research, Scleroderma Foundation "This is a comprehensive but easy-to-read book that I would recommend for all people with scleroderma and their families to read, and then use as a reference. Dr. Mayes has provided a thorough description of the multiple aspects of scleroderma and addresses questions about symptoms, investigations, treatment, and coping with scleroderma. I rate it a 10 out of 10!" --Dr. Janet Pope, MD, MPH, FRCPC, Professor of Medicine, Rheumatologist, Epidemiologist and Scleroderma Specialist, St. Joseph's Health Care, University of Western Ontario, London, Canada "This easily understandable book describes the background of scleroderma and how scleroderma can affect a person. It is of great value to patients who have been recently diagnosed with the disease and also to those who have suffered longer. The last section, on coping with scleroderma, although short, should be particularly useful for patients learning to live with scleroderma." --Daniel E. Furst, MD, Carl M. Pearson Professor of Rheumatology, Director of Clinical Research, David Geffen School of Medicine at UCLA "Dr. Mayes' book is the ultimate resource for patients and their families seeking to gain a better understanding of this complex disease. Her compassion and dedication for her patients is evident throughout the book, from her easy-to-understand description of scleroderma and its manifestations, to more personal subjects such as depression, lifestyle changes, and patient-physician relationships. She promotes further understanding by the use of case studies that patients can easily relate to. If education is the key to alleviating anxiety, making patients more effective partners in their care, and providing a more positive way of coping with scleroderma, then every patient, family member, caregiver, and friend needs this book." --Carolyn Weller, RN, Vice President Education & Research, Scleroderma Foundation "This is a comprehensive but easy-to-read book that I would recommend for all people with scleroderma and their families to read, and then use as a reference. Dr. Mayes has provided a thorough description of the multiple aspects of scleroderma and addresses questions about symptoms, investigations, treatment, and coping with scleroderma. I rate it a 10 out of 10!" --Dr. Janet Pope, MD, MPH, FRCPC, Professor of Medicine, Rheumatologist, Epidemiologist and Scleroderma Specialist, St. Joseph's Health Care, University of Western Ontario, London, Canada "This easily understandable book describes the background of scleroderma and how scleroderma can affect a person. It is of great value to patients who have been recently diagnosed with the disease and also to those who have suffered longer. The last section, on coping with scleroderma, although short, should be particularly useful for patients learning to live with scleroderma." --Daniel E. Furst, MD, Carl M. Pearson Professor of Rheumatology, Director of Clinical Research, David Geffen School of Medicine at UCLA

Preface ix
Part I. Introduction to Terms and Types of Scleroderma
1. What Is Scleroderma?
3(8)
2. Localized Scleroderma: Limited, Localized, Diffuse, Generalized, Systemic, and Not-So-Systemic: What's In A Name?
11(10)
3. Systemic Scleroderma-Diffuse
21(10)
4. Systemic Scleroderma-Limited
31 (10)
Part II. Epidemiology: Who Gets Scleroderma and Why?
5. Genetic Features of Scleroderma: Did You Get It from Your Parents? Can You Give It to Your Kids?
41(7)
6. Epidemiology of Scleroderma: Number of Patients, Occupational Links, and Environmental Concerns
48(7)
Part III. How Scleroderma Affects the Body
7. Raynaud's Phenomenon, Skin Involvement, and Finger Sores
55(14)
8. Scleroderma and the Kidneys
69(6)
9. Scleroderma and the Gastrointestinal Tract
75(18)
10. Scleroderma and the Lungs
93(19)
11. Scleroderma and the Heart
112(6)
12. Scleroderma and Joints, Tendons, Muscles, and Nerves
118(11)
13. Systemic Scleroderma and Pregnancy
129(7)
14. Scleroderma and Sexuality
136(12)
15. Overlap Syndromes and Sclerodermalike Conditions
148(15)
Part IV. Coping With Scleroderma
16. You and Your Doctor
163(7)
17. Living an Unpredictable Life, Facing an Uncertain Future
170(13)
Appendix 1: Criteria for the Classification of Systemic Scleroderma 183(1)
Appendix 2: Scleroderma Support Groups and Resource Materials 184(4)
Glossary 188(11)
Index 199


Maureen Mayes, M.D. is Professor of Medicine at the University of Texas Houston Medical School, where she directs the Scleroderma Clinic. Dr Mayes has been active in scleroderma research, clinical trials and patient care for over 20 years. She is the author of multiple papers and book chapters on the subject and is a past president and director of the National Board of Directors for the United Scleroderma Foundation, and serves on its Medical Advisory Board.

Her professional career has been devoted to the study and treatment of scleroderma. She is the principle investigator for the National Institutes of Health Scleroderma Registry, which seeks to identify common factors amongst patients that could explain their susceptibility to develop this disease. This book represents many years of experience in explaining this puzzling disease to patients and family members.