Customer Reviews

Sarcoidosis Resource Guide and Directory

5 star:		(3)
4 star:		(2)
3 star:		(0)
2 star:		(0)
1 star:		(2)

 

 

If you have been baffled by seemingly unrelated symptoms, have never even heard of this disease before being diagnosed with it, or fear your friends and family have no idea what is going on with you, this book is for you. It details the many faces of sarcoidosis and the body systems it affects, as well as including patient accounts of their struggles which give insight and hope. There are also monographs from physicians who treat various aspects of the disease. Most of all, if you have a physician who has told you that this is a minor disease that doesn't need treatment and will be gone in 18 months,but you are having unexplained problems years later, this book will preserve your sanity. :) It will also let you know what exams should be done regularly even if you aren't having symptoms as long as the disease is active. It will give you information your doctor may not even know, so that you may be sure to keep on top of this illness. Sandra has provided an invaluable, unimitated resource.

This is the first book that has been told through a patient and a pioneer in obtaining public awareness of this disease. You can find out the latest trends in treating this disease. You can also find doctors and support groups in your area. I highly recommend it. I take this book to my support group meetings and use it as a reference. Sandra Conroy is a true trooper in promoting public awareness of this disease.

This book was written in l992 by one of the first people to attempt to bring Sarcodoisis into public knowledge and discussion. (As noted in one review below, it covers disability help and forms, legislation at that time and other things that may not seem relevent now, or available from other sources. The information and sources in one place was not there in 1992 except for Sandra Conroy! Much of what she reported was a result of her hard work [e.g. the legislation] and pioneering.) She was the "Mother" so-to-speak of sharing, support groups, bringing Sarcodoisis to public knowledge, etc. This information were a revelation to many (including this reviewer) when it came out. It may be a little dated, but without it, there would have been no beginning of patient education, sharing etc. (Remember, as recent as this is, we were not "internet" aware that short time ago.) See the other reviews: read the book for what it can give you and is still relevant: to know more about the disease and know there are many survivors still trucking along. {Also, to carify an unfair comment in the negative review, the charge for the book, suports NSRD and does not support the author directly. The non-profit recieves whatever is left after seller and publisher fees.)

I received my book yesterday and was never so disappointed in the book. There were ten blank pages of lines for note taking, 5 pages of a chronic illness survey to complete, 27 large printed pages of "physicians associated with sarcoidosis" that were somewhat inaccurate. The author even wasted two pages to list names of House Resolution 309 listing all the names of the representatives, pages of disability reports which you could easily get from that office without having it printed in a small book such as this. The list could go on and on of the wasting of pages on such nonsense as "page of small MRI machine, 2 pages of Congressman Donald Payne, younger and older picture, and this book didn't have that many pages.

Well, I guess you get the picture. Shame on Sandra Conroy for charging so much for this book. You could obtain more from 10 minutes on the internet on sarcoidosis.

So, needless to say, I am returning this "resource guide and directory" and just generally a "waste of anyone's time" book back to you for a credit on my credit card. People with sarcoidosis should know that if they need more detailed information about sarcoidosis, that this book is not it.

The day my copy of this book arrived, my first feeling was that "I am NOT alone" in this anymore. I am grateful to Sandra Conroy for being willing to share her experience and insights. If I had this resource when I was going through learning about this "mystery disease" when first diagnosed a number of years ago, I would not have felt like a pioneer in the old "Wild West."

I was diagnosed with Sarcoidosis about 1year ago and have gone through several resourses of information. Some have been helpful and some not. This is not the end all manual of "everything you'd ever want to know". But it allows the patient to communicate with their physician on a different level. It challenges you to think about what is going on in your own situation and may stimulate you to ask questions of your doctor that you wouldn't ask otherwise. I would recommend it to anyone that is a patient or has a relative suffering from this illness.

Be well!

I agree with a previous reviewer. This book was a waste of my money. While the information might have been pertinent 11 years ago, it is now terribly outdated. You can find more current, pertinent information on the Internet for free by doing a basic search of sarcoidosis. Newer, safer treatments are now available and it is dangerous to allow this information to be published as fact. This book should be taken out of print with our thanks to the author for her previous efforts.