Product 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 (7)

Sarcoidosis and thought this was lame
Should have named it - I have sarcoid, but listen to ever single health problem through my life.I have sarcoid and while I bought his other book thinking that this one was going to give more insight.Well, I was very disappointed.I found myself struggling to figure out if many of the things he was having happen were actually sarcoid related or just the aging process.Yes the meds and disease does affect other things.But the constant play by play of complaints made me want to throw the book out the window.Anyone knows that going to see a physician is a trying ordeal.BUt over and over you lose your cool and don't suck it up.I take an ipod because I know my day is shot, doing this will help keep you calm.But if you write another, stay specific to sarcoid.A play by play of everything that ills you makes for a very unfulfilled read.I would love to send this book back and get my money back!

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! ... Read more

Customer Reviews (1)

great book for all who are involved with sarc
Sarc is a complex disease, this book, while in mostly medical speak, fills the voids for dr and sarc'ee alike. Patients can not expect dr's to spend this kind of time with them to provide all this knowledge. If my family dr would have had this info, he might not have missed diagnosing me for over 2 yrs.
Known as "harmles2" in the sarc community, I highly recomend this book.

Here the table of contents:
Sarc around the world
Etiology of Sarc
The Immunology of Sarc
Genetics of Sarc
Diagnosis of Sarc
Cardio Imagin IN sarc
Markers of Inflamation in Sarc
Pulmonary Sarc
Neuro Sarc
Cardiac Sarc
Hepatic, Ocular, & Cutaneous Sarc
Quality of Life & Health with Sarc
Treatment of Sarc
Pulmonary Hypertension caused by Sarc
Outcome of Sarc

Buyers should note, each chapter is written by other autors who are reporting their observations in their specialty area. Ussually myltiple authors for each chapter. If you are not in the medical field, you may need a medical terms book to understand what each chapter covers. I think these are a compliation of articles that were written for "Clinics in Chest Medicine" but brought together for this book.

This is a book of sarc specific info written by drs and reasearchers to other doctors. ... Read more

Product Description
This reference serves as the most current and comprehensive source on the many aspects of sarcoidosis ranging from the basic science and pathophysiology of the disease to patient evaluation and treatment-providing a detailed analysis of the pulmonary aspects of the condition including chapters on radiographic manifestations, bronchoalveolar lavage research, pulmonary function studies, and proposed markers for the diagnosis and management of the disease. ... Read more

Product Description

- Comprehensive illustrative encyclopedia containg many rare images

- Includes clinical analysis for the physician

- Designed to complement and provide a visual supplement to already existing texts on sarcoidosis

- Only atlas of sarcoidosis which reviews the multisystmeic nature of sarcoidosis on the context of clinical medicine

- Written by world reknown experts in sarcoidosis

Product 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 (8)

Better than his first book
If you have read Barr's other book, "Me and Sarcoidosis:A Lifetime Partnership", you already know that his grammar leaves one wondering where his "editor" that he speaks so highly of got her training.My guess is that it was a friend who cringed at his errors, and while this is somewhat improved, it still needs much work to flow properly.

Being a sarcoidosis patient myself, I dragged through the books in hopes of learning how to deal with the disease, and how to treat it.By the time I got through this book, I was skipping lots of repetition from prior chapters.

I agree that there was too much focus on the worst case. Conversely, the writer may feel that he received solace from his religious beliefs, but I felt like he tried too hard to push that while being soft on useful facts.

I did think this was an improvement over the first book, as it didn't focus so much on Barr's own case, but I'm still looking for something more useful out there.

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. ... Read more

Product 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 (4)

Helpful, well slightly
For the most part I had already found the majority of info in the book by doing web searches and by connectingw/other sarcoid patients. A lot of the info for support groups and info resources was outdated.

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

Product Description
A 39-year-old African American woman with sarcoidosis developed chylous ascites. Computed tomography (CT) scan showed extensive thoracic, mesenteric, and retroperitoneal lymphadenopathy. Initial therapy with corticosteroids was unsuccessful in managing ascites and she needed frequent large-volume paracentesis for symptomatic relief. Methotrexate was effective in treating the condition and the patient has remained symptom-free for > 2 years. Chylous ascites secondary to sarcoidosis is extremely rare and this is the first reported case of successful treatment with methotrexate. ... Read more

Product Description
Webster's bibliographic and event-based timelines are comprehensive in scope, covering virtually all topics, geographic locations and people. They do so from a linguistic point of view, and in the case of this book, the focus is on "Sarcoidosis," including when used in literature (e.g. all authors that might have Sarcoidosis in their name). As such, this book represents the largest compilation of timeline events associated with Sarcoidosis when it is used in proper noun form. Webster's timelines cover bibliographic citations, patented inventions, as well as non-conventional and alternative meanings which capture ambiguities in usage. These furthermore cover all parts of speech (possessive, institutional usage, geographic usage) and contexts, including pop culture, the arts, social sciences (linguistics, history, geography, economics, sociology, political science), business, computer science, literature, law, medicine, psychology, mathematics, chemistry, physics, biology and other physical sciences. This "data dump" results in a comprehensive set of entries for a bibliographic and/or event-based timeline on the proper name Sarcoidosis, since editorial decisions to include or exclude events is purely a linguistic process. The resulting entries are used under license or with permission, used under "fair use" conditions, used in agreement with the original authors, or are in the public domain. ... Read more

Product Description
Sarcoidosis represents a major challenge for physicians - not just in respiratory medicine, but across a range of specialties. This book, with a multi-disciplinary authorship of the highest standard, presents the most up to date thinking on all aspects of the condition, from epidemiology to clinical manifestations and treatment options. Full coverage is given to both respiratory and non-respiratory aspects; the basic science that underlies the disease and its progression is evaluated in detail, and placed into its correct clinical context. Possible future advances are covered in a concluding section. The editors - all leading figures in the field with international reputations - have compiled the definitive work on the subject in a single volume. The book is fully comprehensive and evidence-based and will be an essential addition to the bookshelves of all whose practice involves the care and treatment of patients with sarcoidosis. ... Read more

Product Description
In March 2001, the National Institutes of Health issued the following warning: "The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading."Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, and printing.This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so. ... Read more

Product Description
A wide range of acute and chronic pulmonary disorders are capable of diffusely affecting the lung parenchyma with variable amounts of inflammation and fibrosis. A variety of agents and clinical conditions have been associated with interstitial lung disorders. Sarcoidosis is one of the most common causes of idiopathic interstitial lung disease. Clinical presentation can range from asymtomatic to severe respiratory symptoms.Sarcoidosis is considered as a multisystemic disease and chest physicians are frequesntly involved in the evaluation and management of this disease. The treatment of Sarcoidosis ramges from nothing to complex immunosuppressive agents. Given the range of effective therapies for Sarcoidosis, appropriate treatment is important.This issue of the European Respiratory Monograph provides the reader with the current status of our understanding of Sarcoidosis. Different aspects of the multisystem involvement of this disease condition are discussed by experts in the filed of Sarcoidosis. Their contributions offer the reader new insights, ideas and perspectives in the management of the disease. ... Read more

Product Description
This comprehensive, up-to-date resource closely examines all aspects of sarcoidosis, its differential diagnosis, and each of the diseases that mimic it–providing the clinical, laboratory, and experimental perspectives of the world's most distinguished authorities. ... Read more

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