Customer Reviews

The Official Parent's Sourcebook on McCune-Albright Syndrome

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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.

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.

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.