The Scleroderma Book: A Guide for Patients and Families

by Maureen D. Mayes

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.

Genres: Health

182 pages, Hardcover

First published May 20, 1999

Reviews

[Susan · Rating 5 out of 5]

Informative

I was just diagnosed. I felt the need to find out what "it" was. This helped me to have a better understanding of the "what". I feel better equipped to take charge of this disease.

[Nancy Richner · Rating 5 out of 5]

Excellent overview with positive action points

This is a very life changing personal disease that baffles most doctors. This books offers information in a very clear tone and well balanced overview of a seldom well understood disease. As a caretaker of someone with the disease for almost 10 years from original diagnosis and almost 30 years of symptoms is enlightening to read such a resource from a doctor in the trenches. Hope to reach out and meet the author to express our gratitude for sharing her experiences.

[Karen · Rating 5 out of 5]

I really appreciated the knowledge and insight this book has. My daughter was recently diagnosed. It caught us all by surprise. It helps knowing what may lie ahead so the right questions are asked. Hoping it is mild and doesn't progress but like being prepared. Written in a way that is factual without being completely reduced to tears.

[Margie Dorman · Rating 5 out of 5]

Necessary Information

This book on Scleroderma should be part of every scleroderma patient's medical library. It is well-written,informative, and easy to use.

[Marilyn · Rating 4 out of 5]

This book was extremely helpful with information about the genetics, symptoms, and complications of scleroderma. I especially appreciated the chapter about the emotional impact of the diagnosis; the chapter is called "Living An Unpredictable Life Facing An Uncertain Future". Yep. That is exactly what it feels like. How wonderful to read advice that is frank and helpful as I have discovered that my friends and family are having more trouble coping with the diagnosis then I am.

The book is a little out of date on the treatment options, but some internet searching will help with that. The information about how to take charge and coordinate the team of doctors was priceless. I recommend this book to other scleroderma patients and those who may be caretakers or family.

[Annelise · Rating 4 out of 5]

Easy to understand. The book describes a bit of the background of scleroderma and how it can affect a patient. I use it as a reference book because it is easy to use the index at the back of the book and because of the easy language. You catch the main part of why your body acts like this and that. But only use it as a guideline - because scleroderma is very complexed and the only one who can treat you right is your doctor. The book helps you to understand a bit of this very complex and rare disease.

[Tami · Rating 3 out of 5]

I found this book really helpful in understanding what Scleroderma and is not. Just knowing what could happen was better then not knowing. The book is about 10 years old so I am sure some of the info is out of date. However, there were some on-line resources in the back that I hope to check out.

[Sharon Mcbride · Rating 3 out of 5]

I have the 'Revised Edition' published in 2005. Quite a useful book for dipping in and out of but treatments have changed and improved so much in the last 10 years it's both breath-taking and reassuring. Written in user friendly terminology. Quite a useful little tome.

[Susan · Rating 4 out of 5]

Better than anything out there, but still lacking.