The Scleroderma Book: A Guide for Patients and Families
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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
Product Description
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.
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4 reviews
4 of 4 people found the following review helpful
The Scleroderma Book
11 Jun 2009
Format:Hardcover
I've recently been diagnosed with Limited Systemic Scleroderma. This book opened my eyes to what the future might be for me. It answered a lot of questions I had. Just made me feel as though I have some control over this disease. WONDERFUL!!!
For me Knowledge concerning my health is extremely important.
For me Knowledge concerning my health is extremely important.
4 of 4 people found the following review helpful
Best Scleroderma Book Ever
2 Dec 2008
Format:Hardcover
This will teach and inform you, in layman's terms, everything you need to know about Scleroderma. I've read everything I could get my hands on about this horrible disease and this book is the best ever. Thank You, Dr. Mayes.
4 of 4 people found the following review helpful
The Scleroderma Book
4 Jun 2008
Format:Hardcover
The book was recommended to me and turned out to be as good as promised. An excellent resource for a basic, easy-to-understand-by-a-lay-person description of scleroderma, including its symptoms, variations, possible treatments, what to expect. My daughter was recently diagnosed with the disease and our family is gathering as much as information as possible to know what it is and how deal with it.
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