Scleroderma: A New Role For Patients and Families

Rating:
Summary: Excellent book of practical healthcare resources
Review: As webmaster of Scleroderma from A to Z ..., I highly recommend this book for people affected by scleroderma, but with one caveat:

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.

Rating:
Summary: Just what I was looking for!
Review: I found this book completely useless, although I suppose it may be helpful to U.S. patients. It seemed to me to be a catharsis for the writer, nothing else. As a patient suffering from scleroderma, I wasted my money, and the book ended up in the garbage after I had looked through it. I think it should be made clear that this is not helpful to patients or their families living outside the U.S.

Rating:
Summary: Useless except for U.S. patients
Review: I found this book completely useless, although I suppose it may be helpful to U.S. patients. It seemed to me to be a catharsis for the writer, nothing else. As a patient suffering from scleroderma, I wasted my money, and the book ended up in the garbage after I had looked through it. I think it should be made clear that this is not helpful to patients or their families living outside the U.S.

Rating:
Summary: Just what I was looking for!
Review: I got this book for my mother who was diagnosed with scleroderma 5 months ago. It answered questions that we hadn't even thought of yet. The chapters on finding the right doctor and getting information on the Internet were the best. This is a great resource.

Rating:
Summary: Clear, intelligent, practical guide
Review: Michael and Karen Brown didn't have decades to find a doctor and investigate treatments for her scleroderma. The disease took a rare, speedy course to multiple complications and an early death. As a result, Michael shares his experience with us in "Scleroderma, A New Role for Patients and Families." The book is packed full of information usually gathered over years or even decades of struggle with the disease.

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.

Rating:
Summary: Excellent book of practical healthcare resources
Review: 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 scleroderma. Online we sometimes joke about "Kleenex alerts". This story goes far beyond a mere Kleenex alert; Mike 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.

Rating:
Summary: Reviewed by SclerodermaSupport.com
Review: This is a book from someone who has traveled the route with his wife to learn about scleroderma and to obtain quality medical care and necessary assistance. Many avenues they traveled are shared in detail. The author clearly wrote this book in an aim to assist others taking the same path he, his wife and his family were forced to endure.