The Official Parent's Sourcebook on McCune-Albright Syndrome

Rating:
Summary: Sourcebook thin on details
Review: 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.

Rating:
Summary: Recommend for all the new patients!!!
Review: 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.