About the Book
Scleroderma means hardening of the skin, due to a malfunction of the vascular and immune system resulting in the overproduction of collagen (a protein substance found in the body's connective tissue). In this second edition of The Scleroderma Book, Dr Maureen Mayes - the leading authority in the field - 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.
Scleroderma can be localized (small patches of hardened skin, which tend to clear up over time), but may become systemic with excess collagen building up in various organs such as the oesophagus, kidneys, lungs, gastrointestinal tract, heart skin, and peripheral nervous system. The disorder most commonly occurs in women between the ages of 20 and 40. However, men and children can be affected as well. The disease is not contagious and is not thought to be inherited and currently, there is no known cure.
Writing specifically for patients and their families, Dr. Mayes offers sympathetic and reassuring advice on matters that often concern those living with scleroderma, 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 humoured, 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.
Touching on virtually every aspect of this disorder, The Scleroderma Book provides a reliable source of information and reassurance for patients of any age, no matter how severe their form of the disease.
Table of Contents:
PART 1: INTRODUCTION TO TERMS AND TYPES OF SCLERODERMA ; 1. What is scleroderma? ; 2. Localized scleroderma: Limited, localized, diffuse, generalized, systemic and not-so-systemic: What's in a name? ; 3. Systemic scleroderma - diffuse ; 4. Systemic scleroderma - limited ; PART 2: 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? ; 6. Epidemiology of scleroderma: Number of patients, occupational links and environmental connections ; PART 3: HOW SCLERODERMA AFFECTS THE BODY ; 7. Raynaud's phenomenon, skin involvement and finger sores ; 8. Scleroderma and the kidneys ; 9. Scleroderma and the gastrointestinal tract ; 10. Scleroderma and the lungs ; 11. Scleroderma and the heart ; 12. Scleroderma and joints, tendons, muscles and nerves ; 13. Systemic scleroderma and pregnancy ; 14. Scleroderma and sexuality ; 15. Overlap syndromes and sclerodermalike conditions ; PART 4: COPING WITH SCLERODERMA ; 16. You and your doctor ; 17. Living an unpredictable life, facing an uncertain future ; Appendix 1: Criteria for the classification of systemic scleroderma ; Appendix 2: Scleroderma support groups and resource materials
About the Author :
Maureen Mayes, M.D. is Professor of Medicine at the University of Texas Houston Medical School, where she directs the Scleroderma Clinic. She is a past president and director of the National Board of Directors for the United Scleroderma Foundation, and serves on its Medical Advisory Board.
Review :
"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
