Book Description
This is a story about one man’s journey through the stages of living with a chronic health condition: sarcoidosis. However it could be a story of anyone living with any type of chronic health condition that alters the everyday activities a “normal” human being enjoys and the effect it has on everyone around them. The book touches on many subjects ranging from dealing with the various related side conditions such as hypertension, two types of diabetes (sugar and water), chronic fatigue and many others to the various medications needed to survive and the effects they have on not only the patient but also everyone. It touches on various subjects that are critical to surviving a chronic health condition not only for the patient but again those who are associated with that person on a daily basis!

There are valuable tips from a normal person’s perspective that will help you maneuver through today’s complicated medical environment. But most importantly the book will let you know you are not alone in your experiences and hopefully will provide you with positive insights on how to survive a chronic health condition. It will give everyone something to relate back to your everyday life!

Customer Reviews (6)

Must reading for health care providers
Finally a book on Sarcoid from the patient's perspective - Gilbert was able to put into words what I have been trying to explain and have been going through to others since I was diagnosed with pulmonary sarcoid in 2000. I feel all health care providers treating Sarcoid patients should read this book to better understand what we go through - especially since the disease is so rare. Insightful, and thoughtful, I applaud Gilbert's efforts in writing the book. It really helped me as I now have someone to empathize with and have a better understand of my disease and what I have gone through and continue to go through.

Interesting, but not usual
I bought this book because I was recently diagnosed with sarcoidosis, and was interested in how it had affected him. Well, he had a very unusual case of sarcoidosis, very different from what most people have, so don't read this book for that! But do read the book for the human story of living through difficulty, of striving to go on in spite of desperate circumstances. The author is a hero in my book. The writing itself could have used a little more editing, as there are grammatical mistakes and misspellings. If that sort of thing bugs you, be warned.

A positive realistic account from an average person
I found this book to be an honest account of how an average person deals with living with a chronic health condition.Although we are all unique, I found myself in a lot of the emotions and experiences that Mr. Barr wrote about.I also had the opportunity to hear Mr. Barr speak in late 2002, where during his talk he did actually give an apology for the mistakes in the first version, along with offering to replace the old version with a Revised Edition (IE: in my copy he was given "a pair of crutches" and sent on his way).In fact, I was under the impression that the first version was unavailable as of that time (Fall 2002), but I guess used copies are still floating around.I find it a refreshing change to hear someone stand up and take responsibility for a mistake (even if others were probably responsible) then correct it, especially in such a public forum.My hat is off to you Mr. Barr!It helped me to hear the positive accounts of his support elements, as I do not have anyone that understands, except one family member who lives out of town.But now we have become closer as I appreciate her long distance support more than ever.Although our physical symptoms are different, I also related to the mental aspect of his experiences.It helped me realize even more that I'm not alone in what I feel.The book is a little long (over 300 pages) but all in all it was worth the read.The main thing I enjoyed was just hearing an everyday person's account of living with sarcoidosis.Mr. Barr, please continue to help bring awareness and discussion to our disease!

Sarcoidosis Caregiver In Michigan
After reading an interview the Diabetes Insipidus Foundation published in their newsletter with Mr. Barr and seeing him on a Detroit TV newscast, I purchased his book and found it to be very touching, inspiring and informational in regard to understanding what patients with chronic health conditions experience.My sister suffers from sarcoidosis and after reading this book I'm able to better understand the frustrations she endures on a daily basis.Mr. Barr's straight forward, direct approach in telling his story is refreshing in this day and age.He holds nothing back!My sister also found the book something she could easily relate to and currently another friend, who also suffers from this disease, can't put it down.We need more books that tell the patient's point of view.I'm glad Mr. Barr had the courage to tell his story!

Reader from Atlanta GA
I just completed the revised edition (which had the editing issues corrected) as other members of my family are now reading it as well.It was enlightening to finally read a book from an average person that must deal with the same experiences as I do.I was finally diagnosed with sarcoidosis in my lungs and on my skin in 1993.The author does not flinch from outlining his most personal symptoms in a very direct approach.Considering he spent over 4 years being misdiagnosed there were several negative experiences however I did not feel that he felt any self-pity or unjustly bashed the professionals he was exposed to but instead just told the truth and in the end gives credit to those who were able to help him.For me it was a roller coaster of emotions.I appreciate the fact that he gave much due respect to God, his loving family and those who supported him.Although the book is over 300 pages, it touches on every aspect of living with chronic health conditions and the physical and mental stress involved.I admire Mr. Barr's courage to tell his story in such a direct manner and open up to the world.The only thing I found insulting about this book were some of the experiences we all experience and they needed to be told. ... Read more

Book Description
Living With Sarcoidosis & Other Chronic Health Conditions gives firsthand accounts of what life is like when you experience chronic health conditions, as only a patient can articulate, by way of patient stories, support options, insurance tips and a doctor interview.Although each situation is unique, they are also so similar and it's those similarities that helps us cope in a positive manner with our current situations, regardless if you are the patient, caregiver, medical professional, employer or just a friend.The importance of understanding your reality, honestly accepting that reality, therefore being able to live a positive and productive life, is the constant message the book stresses by way of living examples.This book strictly gives a patient's perspective of the many aspects of life with chronic health conditions and is both informative and inspirational as to how to achieve positive goals, as living with a chronic health condition affects all aspects of your life along with those "others" in your life as well.It's a must read for anyone who lives with or knows someone with a chronic health condition...especially a mysterious disease such as sarcoidosis.There will be something that will touch some aspect in everyone's life!

Customer Reviews (7)

Realism
As a sarcoidosis patient since 1996 I found this book to be a refreshing realistic look at how people cope with chronic health problems and the issues most of us face. Although each situation was different, and in some cases unique to anyone I know, there were many physical and emotional aspects that I could identify with in regard to my life. Personally I didn't take the author as being negative but instead honest about what happened to him and the others. Sometimes things happen in life that aren't always good and it's good to finally hear someone talk about the problems instead of looking the other way, as most tend to do. Of course there are people who don't experience problems (I wish I was one of them) but bringing them out and addressing them in order to turn them positive isn't whining. The author does have a unique style of writing that might bother those who weigh in on every aspect of the English language but personally it helped me relate even more so to the book because I know the author is one on us! It takes a lot of guts to share with the world your health life. If you can look at life and your situation with an open mind this is an excellent read for anyone dealing with sarcoidosis or any other health situation.

Terrible
No practical info whatsoever for a sarcoidosis patient like myself, too whiny and I wasn't interested in his relationship with god!

A sarcoidosis patient, too
Lots of nice resources appear in the book and the author's story and those of his selected pen pals are frightening "worst case" sorts of hsitories.Unfortunately, the book is poorly written:passive, repetitive style and odd gramatical constructions distract the reader from the engaging content.Moreover, the focus on worst case scenarios and incompetent medical professionals is at great odds with my experience:I've been diagnosed with sarcoidosis twice in the past 7 years (I had a remission), each time within a month of odd chest X-rays, and each time in the absence of any symptoms whatsoever.Each time the doctors were very much on top of results and very quickly got me to specialists.Since I've never had a SINGLE symptom, the worst cases described in the book just don't speak to me, and may frighten readers unnecessarily.

Attitude counts
Maybe it is just me, but I found the author's attitude to be so negative as to negate some of the information. I have a severe case of sarcoidosis and am going through the steroid and now a low dose chemo drug therapy. It is life changing, but I am not going to let it ruin my life. I am blessed with good doctors and a wonderful support system of family and friends. I continue searching for information on this disease in a positive manner.

Excellent Patient Point Of Views
There aren't many (if any) books available that are written from a patient's point of view, especially for sarcoidosis patients, but this book really hit home for me.The author made you feel the emotions and feelings each patient felt as he wrote their unique stories, including his own.There was no hype but instead just everyday people and their struggles and successes living with chronic health conditions.The book also touched on the emotions caregivers feel and how important they are to our lives which is another subject rarely written about.To top it off, the interview with Dr. Sharp gave me a warm feeling to hear a doctor acknowledge some of the issues sarcoidosis patients deal with.I heard of this book from a support group then I actually wrote the author directly through his website and he responded himself within a few days.Thank you Mr. Barr for promoting sarcoidosis awareness and the many challenges patients with chronic health conditions face on a daily basis.Keep up the positive work and please continue to speak your mind.We need our stories told. ... Read more

Book Description
This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to sarcoidosis (also Besnier-Boeck disease; Boeck's sarcoid; erythema nodosum; Hilar adenopathy plus uveitis; Loeffgren's syndrome; sarcoid of Boeck), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on sarcoidosis. Given patients' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms. ... Read more

Customer Reviews (3)

Useless
The book has little useful information on Sarcoidosis and is mostly abstracts of related journal articles. Save your money - spend 1 hour searching the web and you will be much more informed about Sarcoidosis than you would be by reading this book. Very very very disappointing. You can find better, more detailed information on the web for free. I sent it back the day I got it. If you're reading this review then you know how to use the internet. Don't waste your money on this.

waste of money
Very disappointing book. I got more information by typing sarcoidosis into google.

The Book's Audience
Designed for people who are new to sarcoidosis, this sourcebook has been created for patients who have decided to make education and Internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it is designed for patients who are less familiar or are new to the Internet as a medical research tool. It tells the reader where and how to look for information covering virtually all topics related to sarcoidosis, from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are compiled and reproduced to give you some of the latest official information available to date on sarcoidosis. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Sarcoidosis: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Sarcoidosis; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Sarcoidosis; Chapter 5. Patents on Sarcoidosis; Chapter 6. Books on Sarcoidosis; Chapter 7. Multimedia on Sarcoidosis; Chapter 8. Periodicals and News on Sarcoidosis; Chapter 9. Physician Guidelines and Databases; Chapter 10. Dissertations on Sarcoidosis; PART III. APPENDICES; Appendix A. Researching Your Medications; Appendix B. Researching Alternative Medicine; Appendix C. Researching Nutrition; Appendix D. Finding Medical Libraries; Appendix E. Your Rights and Insurance; Appendix F. More on the Lungs; Appendix G. More on Lung Diseases; ONLINE GLOSSARIES; SARCOIDOSIS GLOSSARY; INDEX. Related topics include: Besnier-Boeck disease, Boeck's sarcoid, erythema nodosum, Hilar adenopathy plus uveitis, Loeffgren's syndrome, sarcoid of Boeck, Schaumann's disease. ... Read more

Book Description

Sarcoidosis is a complex multisystem disease. Shortness of breath (dyspnea) and a cough that won't go away can be among the first symptoms of sarcoidosis, but sarcoidosis can also show up suddenly with the appearance of skin rashes and other dermatoses.

Book Description

This reference is the most current and comprehensive source on the many aspects of sarcoidosis, covering topics ranging from the basic science and pathophysiology of the disease to patient evaluation and treatment. It provides a detailed analysis of the pulmonary aspects of the condition and includes chapters on radiographic manifestations, bronchoalveolar lavage research, pulmonary function studies, and proposed markers for the diagnosis and management of the disease.

Book Description
This up-to-date electronic book on CD-ROM provides the best collection available anywhere of official Federal government information and documents on the subject of sarcoidosis. This CD-ROM uses next-generation search technology that allows complete indexing and makes all files on the disc fully searchable. For patients, practical information is provided in clearly written patient education documents. For medical professionals, doctor reference tools and texts have detailed technical information and clinical background material.

This thoroughly researched collection presents vital information from many authoritative sources: National Institutes of Health (NIH), the Combined Health Information Database (CHID), the Food and Drug Administration, the Centers for Disease Control (CDC), and the National Heart, Lung, and Blood Institute (NHLBI). Contents include clinical and medical information, with information on signs, symptoms, testing, diagnosis, treatment, and more.

In addition, as a bonus we have included an encyclopedic collection of general medical and health documents - thousands of pages with extensive material from the CDC and NIH on hundreds of diseases and health topics from A to Z, along with FDA drug and medical publications, government consumer healthcare tips, disease prevention programs, dietary guidelines, and travelers' health information. Since navigating the Internet to find additional non-governmental medical information can be confusing, we've also provided our exclusive "Guide to Leading Medical Websites" with updated links to 73 of the best sites for medical information! By using weblinks on the CD-ROM, you can quickly check for the latest clinical updates directly from the government.

This CD-ROM has over 30,000 pages reproduced using Adobe Acrobat PDF software and Reader software is included. Advanced search and indexing features are built into our reproduction, providing a complete full-text index. This enables the user to search all the files on the disk at one time for words or phrases using just one search command! The Acrobat cataloging technology adds enormous value and uncommon functionality to this impressive collection of government documents and material. There is no other reference that is as fast, convenient, comprehensive, and portable!

Our CD-ROMs are privately-compiled collections of official public domain U.S. government files and documents - they are not produced by the federal government. They are designed to provide a convenient user-friendly reference work, utilizing the benefits of the Acrobat format to uniformly present thousands of pages that can be rapidly reviewed or printed without untold hours of tedious searching and downloading. This book-on-a-disc makes a superb reference work and educational tool for patients and their families, physicians, and other medical professionals. (Information on this CD-ROM is NOT a substitute for professional medical advice; of course, readers are urged to consult with a professional health care provider for any suspected illness.) ... Read more

Customer Reviews (1)

WHAT A RIP OFF, A SCAM, AND A JOKE!
This is a CD-ROM that is a compilation of free, downloadable PDF reports that you can find on your own online. Most of it is from the National Institue of Health and most of it has nothing to do with Sarcoidosis. The CD was made by someone from home, complete with cheesy stick on label. The author downloads free stuff off of the internet, puts it on a CD, and sells it to suckers like me who just found out they have a strange disease and want to educate themselves about their condition. "Complete Medical Guide to Sarcoidosis . . ."???? You have got to be kidding me. There are so many better, more detailed resources online for Sarcoidosis information that I won't even list them here. Just spend an hour searching the web and you will learn much more than is on this cruel joke of a CD. How do these people sleep at night? I have been duped! ... Read more

Book Description
This digital document is an article from Ebony, published by Thomson Gale on August 1, 2005. The length of the article is 1314 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: The mystery of sarcoidosis.(care and treatment)
Author: Joy Bennett Kinnon
Publication: Ebony (Magazine/Journal)
Date: August 1, 2005
Publisher: Thomson Gale
Volume: 60Issue: 10Page: 106(3)

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Book Description
This digital document is an article from Southern Medical Journal, published by Thomson Gale on March 1, 2007. The length of the article is 1846 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Gastric sarcoidosis: a case report and review of the literature.
Author: Mark Friedman
Publication: Southern Medical Journal (Magazine/Journal)
Date: March 1, 2007
Publisher: Thomson Gale
Volume: 100Issue: 3Page: 301(3)

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Book Description
This digital document is an article from Southern Medical Journal, published by Southern Medical Association on September 1, 2001. The length of the article is 979 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Sarcoidosis Manifested as Hypercalcemic Pancreatitis.
Author: Sumit Gaur
Publication: Southern Medical Journal (Refereed)
Date: September 1, 2001
Publisher: Southern Medical Association
Volume: 94Issue: 9Page: 939

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Customer Reviews (7)

Don't waste your money.
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.

Basics and History from an early survivor/patient proponent
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.)

Sarcoidosis Resource
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."

Some of the mystery is unraveled
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!

Sarcoidosis Resource Guide and Directory
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. ... Read more

Book Description
This digital document is an article from Southern Medical Journal, published by Thomson Gale on September 1, 2005. The length of the article is 1103 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Sarcoidosis mimicking disseminated testicular cancer.(Case Report)
Author: Ibrahim SultanAli
Publication: Southern Medical Journal (Magazine/Journal)
Date: September 1, 2005
Publisher: Thomson Gale
Volume: 98Issue: 9Page: 935(2)

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Book Description
This digital document is an article from Southern Medical Journal, published by Southern Medical Association on March 1, 2005. The length of the article is 783 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Sarcoidosis presenting as acute respiratory failure.(Editorial)
Author: Muthiah Pugazhenthi
Publication: Southern Medical Journal (Refereed)
Date: March 1, 2005
Publisher: Southern Medical Association
Volume: 98Issue: 3Page: 265(1)

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Book Description
This digital document is an article from Southern Medical Journal, published by Thomson Gale on December 1, 2005. The length of the article is 2278 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Eosinophilic pleural effusion, peripheral eosinophilia, pleural thickening, and hepatosplenomegaly in sarcoidosis.(Case Report)
Author: Evaggelos Vafiadis
Publication: Southern Medical Journal (Magazine/Journal)
Date: December 1, 2005
Publisher: Thomson Gale
Volume: 98Issue: 12Page: 1218(5)

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Book Description
This digital document is an article from Dermatology Nursing, published by Thomson Gale on February 1, 2007. The length of the article is 1360 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

From the author: Dermatology Nursing Essentials: A Core Curriculum (2nd edition) was written to provde the reader with core knowledge about the specialty of dermatology nursing. Key points from the text are highlighted to test and review your dermatology nursing knowledge. These quick hits of information are no substitute for the indepth analysis provided in the Core Curriculum, but are designed to whet your appetite for the comprehensive content that the Core delivers. References for the information presented here can be found in the Core Curriculum. To order your personal copy of the Core, visit DNA's Web site at www.dnanurse.org or call (800) 454-4DNA.

Citation Details
Title: Cutaneous manifestations of systemic disease: sarcoidosis, GVHD, behcet's disease, and pyoderma gangrenosum.(Dermatology Nursing Essentials: Core Knowledge)(Author abstract)
Author: Sue Ann McCann
Publication: Dermatology Nursing (Magazine/Journal)
Date: February 1, 2007
Publisher: Thomson Gale
Volume: 19Issue: 1Page: 75(3)

Article Type: Author abstract

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