The Official Parent's Sourcebook on McCune-Albright Syndrome [Paperback]

James N. Parker (Author), Icon Health Publications (Author)

Book Description

Publication Date: July 15, 2002

This sourcebook has been created for parents who have decided to make education and Internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it also tells parents where and how to look for information covering virtually all topics related to mccune-albright syndrome, from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on mccune-albright syndrome. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on McCune-Albright Syndrome: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and McCune-Albright Syndrome; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on McCune-Albright Syndrome; Chapter 5. Books on McCune-Albright Syndrome; PART III. APPENDICES; Appendix A. Researching Your Child's Medications; Appendix B. Researching Nutrition; Appendix C. Finding Medical Libraries; Appendix D. Your Child's Rights and Insurance; ONLINE GLOSSARIES; MCCUNE-ALBRIGHT SYNDROME GLOSSARY; INDEX. Related topics include: Albright Syndrome, Osteitis Fibrosa Disseminata, Polyostotic Fibrous Dysplasia, Precocious Puberty with Polyostotic Fibrosis and Abnormal Pigmentation.

Editorial Reviews

From the Publisher

This is a "must have" reference book for patients, parents, caregivers, and libraries with medical collections. This sourcebook is organized into three parts. Part I explores basic techniques to researching mccune-albright syndrome (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to mccune-albright syndrome. It also gives you sources of information that can help you find a doctor in your local area specializing in treating mccune-albright syndrome. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with mccune-albright syndrome. Part II moves on to advanced research dedicated to mccune-albright syndrome. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on mccune-albright syndrome. When possible, contact names, links via the Internet, and summaries are provided. In general, every attempt is made to recommend "free-to-use" options. Part III provides appendices of useful background reading for all patients with mccune-albright syndrome or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with mccune-albright syndrome. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with mccune-albright syndrome.

Excerpt. © Reprinted by permission. All rights reserved.

Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: "The number of Web sites offering" health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading." Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor's offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. ... This book has been created for patients who have decided to make education and research an integral part of the treatment process. ... While this sourcebook covers mccune-albright syndrome, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that mccune-albright syndrome is often considered a synonym or a condition closely related to the following: Albright Syndrome; Osteitis Fibrosa Disseminata; Polyostotic Fibrous Dysplasia; Precocious Puberty with Polyostotic Fibrosis and Abnormal Pigmentation.

Product Details

• Paperback: 152 pages
• Publisher: ICON Health Publications (July 15, 2002)
• Language: English
• ISBN-10: 059783203X
• ISBN-13: 978-0597832031
• Product Dimensions: 11 x 8.2 x 0.4 inches
• Shipping Weight: 12.8 ounces (View shipping rates and policies)
• Average Customer Review: 2.3 out of 5 stars  See all reviews (3 customer reviews)
• Amazon Best Sellers Rank: #294,002 in Books (See Top 100 in Books)

Customer Reviews

Most Helpful Customer Reviews

4 of 4 people found the following review helpful:

1.0 out of 5 stars Sourcebook thin on details, March 30, 2003

By 

Charles W. Harles (Washington, DC United States) - See all my reviews

This review is from: The Official Parent's Sourcebook on McCune-Albright Syndrome (Paperback)

I am a person with McCune Albright Syndrome (MAS) and I help run a support group of over 700 persons with variations of this disease. I was surprised and pleased to see there was a book on MAS. After reading the "Official Parent's Sourcebook on McCune-Albright Syndrome" I am somewhat disappointed. The 118 page book has probably less than a dozen pages with any substantive information on MAS. I know of the many questions parents have about MAS because I handle an average of 50 e-mails a week for our support group. This book would answer few of those questions. There is nothing about pain issues which are a major problem for people with MAS, the is no discussion about diagnosis, and there is no information about the special issues realting to MAS and fibrous dysplasia in the skull.

On a positive note the Sourcebook does give good information on how to use the internet as a means of searching for information on rare diseases such as MAS. I was glad to see there were references to the MAGIC Foundation and the Paget's Foundation web sites, both excellent sources of information.

Searching the internet for "fibrous dyspalsia" and "McCune Albright Syndrome" will bring much more substantive information.

1.0 out of 5 stars Not Worth it, February 21, 2006

By 

K. Mccarthy (New York) - See all my reviews
(REAL NAME)   

This review is from: The Official Parent's Sourcebook on McCune-Albright Syndrome (Paperback)

My daughter suffers from MAS and I was thrilled to FINALLY find a book that discusses the syndrome. However,I found that it really didn't tell me anything more than I already knew as an educated MAS parent. It seems to be nothing more than a cookie cutter book molded to whichever disease is being covered. A parent with an MAS child would most likely have already uncovered most of the info that this book offers long before they read it. Word of advise- visit www.magicfoundation.org and become a member- that will prove to be your most valuable resource.

5.0 out of 5 stars Recommend for all the new patients!!!, May 7, 2003

By 

Dr. Anne Chang (Chicago) - See all my reviews

This review is from: The Official Parent's Sourcebook on McCune-Albright Syndrome (Paperback)

Those, who are new to the disease and are interested in researching it further, will find this book extremely helpful. It is an excellent compilation of valuable sources.