Scleroderma: A New Role for Patients and Families [Englisch] [Taschenbuch]

Read the last chapter of this book first!

Although Mike wrote this book for those affected by scleroderma, it is a very practical guide that would be of great benefit to anyone dealing with a chronic or severe illness.

The book presumes that the reader has a certain level of knowledge about the various types of scleroderma. It is not a book about scleroderma symptoms or treatments (see Dr. Mayes' book for that), but rather deals on a higher level of how to successfully navigate the complex world of healthcare, health insurance, and Internet healthcare resources.

Mike truly saved the best for last in this book, by sharing his no-holds-barred, gripping and searing story of his family's nearly unbearable struggle with systemic scleroderma. Online we sometimes joke about "Kleenex alerts". Mike's story goes far beyond a mere Kleenex alert; with brazen honesty, he unerringly strikes to the heart and soul of the depths of pain and the heights of love experienced by any family coping with a fatal illness.

If you think you already know how to navigate healthcare, insurance and the Internet, get this book anyway, and read the last chapter. That alone, I guarantee you, will be worth it's weight in gold.

Among chapters on finding a doctor and managing your care, a task that is ironically thrust upon us at a time when we are often too sick and tired to think, are unique studies like "Alternative vs. Mainstream Care." Though the title would initially make you think this is an all-or-nothing analysis, Mr Brown does a good job of helping us to see them as cooperative efforts. He reminds us that "much of what doctors do is based on opinion and consensus," before we dismiss alternative and complementary treatments as unscientific.

His "Finding Your Own Answers" gives readers a good, basic lesson in how to surf the net for information and what to avoid. Being a denizen of the Internet, I found the following quote appropriate: "Ten years ago, newly diagnosed patients were faced with limited information that was often incomplete, outdated, and sometimes inaccurate. Today, newly diagnosed patients can get an unlimited supply of information from the Internet that is often incomplete, outdated, and sometimes inaccurate." He reminds us that it's still up to us to find what of this unlimited supply is useful.

It's significant that Mr Brown initially didn't want to include the chapter that talks about his own family's experience, for fear that it was too unique to provide any help to the needs of others with the disease. As I've experienced at my website, he ultimately understood that sharing stories brings us together and reminds us that we're not alone in this effort.

This book reminded me of information my Dad gave me on other issues in my life - buying a house, or a car, how to start making investments, etc. Clear and intelligent, it's a practical starting point for everyone involved, even if they aren't just starting out in the disease.