The Scleroderma Book

The Scleroderma Book : A Guide for Patients and Families

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Description

An autoimmune disease in the family with Lupus, Rheumatoid Arthritis, and Polymyositis, Scleroderma afflicts hundreds of thousands of people in the United States. And yet there are very few sources of information for men and women with this disease. Now, in The Scleroderma Book, one of the nation's leading authorities provides a comprehensive guide written specifically for patients and their families. Dr. Maureen Mayes has drawn 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. Touching on virtually every aspect of this disorder, The Scleroderma Book can be used as a reliable source of information and reassurance for patients of any age and no matter how severe their form of the disease.show more

Product details

  • Hardback | 192 pages
  • 147.1 x 214.9 x 20.8mm | 393.14g
  • Oxford University Press Inc
  • New York, United States
  • English
  • 0195115074
  • 9780195115079

About Maureen D. Mayes

Maureen D. Mayes, M.D., is a nationally recognized authority on scleroderma. She is a past president and director of the National Board of Directors for the United Scleroderma Foundation, and remains active in the organization, serving on its Medical Advisory Board. A Professor of Internal Medicine, Division of Rheumatology, at Wayne State University School of Medicine in Detroit, she lives in Farmington Hills, Michigan.show more

Review Text

A little understood disorder, scleroderma is a particularly thorny medical problem: neither cause nor cure is known, and the disease presents in multiple guises. This slender, sympathetic guide sets out clearly and comprehensively what is known about occurrence and treatment. Rheumatologist Mayes (Wayne Sate University School of Medicine) brings nearly 20 years of practice to bear here; she defines scleroderma as an autoimmune disease (meaning the body's immune system attacks its own tissue as though it were a foreign invader) that affects blood vessels and connective tissue. It can occur in localized or systemic form and, as Mayes repeatedly points out, is a disease "characterized by exceptions". Mayes discusses who gets scleroderma (women much more frequently than men; it doesn't seem to run in families) and the myriad ways it can affect the body (from thickened, tight skin to kidney failure). Possibilities for treatment and symptom control are laid out, and Mayes attends to psychological and social issues of living with such a variable disease. She is impatient with the current fad of considering disease as an opportunity for growth: "Getting a diagnosis of a chronic, possibly debilitating disease is not good news, and no matter how you rephrase it, it is very difficult to see it as an opportunity." But she is clearly sympathetic, admiring the courage of those struggling with this disorder. A sound resource, both informative and practical. (Kirkus Reviews)show more

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28 ratings
4.21 out of 5 stars
5 43% (12)
4 39% (11)
3 14% (4)
2 4% (1)
1 0% (0)
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