The Scleroderma Book A Guide for Patients and Families

by Mayes, Maureen D.

• ISBN13: 9780195169409
• ISBN10: 0195169409
• Edition: 2nd
• Format: Hardcover
• Copyright: 2005-05-01
• Publisher: Oxford University Press

Summary

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 accessibledescription 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 theblood 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 doctortreat 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 ofscleroderma 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

Author Biography

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.

Table of Contents

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