Sarcoidosis Books

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.

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.

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.

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!

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!

Karen Duffy writes about her affliction with a somewhat uncommon disease in a biographical tale that combines a story about her interesting life with a story about her life dealing with the trials and tribulations of sarcoidosis,a chronic inflammatory disease that affects many different parts of the body.Her wonderful sense of humor and upbeat attitude make this book most entertaining as well as inspiring.

Duffy's storytelling is full of name dropping and "my life is so cool" immaturity that I couldn't make myself read more than a couple of chapters, and that was more painful than my sarcoidosis. This book is awful!

After spending way too much time contemplating which RR tome to add to my collection I stumbled upon an episode of Party Planning with Dave Tuterra (sp?) and instantly decided to get Karen's new book instead. LOVE IT!

I am about 35 years old and I grew up thinking Karen Duffy was ABSOLUTELY the hottest and coolest VJ/ model on the planet! I wanted to live her life, have her job, and sleep with her boyfriends! If anyone could convince me to "play for the other team" it would have been her. My girlfriends and I even used her moto- "We're getting married in May- may the day never come!"

I actually cried when I heard about her illness which was regarded as terminal at the time. I read Model Patient- her book about her struggle with CNS Sarcoidosis and was amazed that the icon of party, rock and roll and pop culture could be such a strong and resilient person underneath.

Now, like the rest of us she has traded in the club scene and coctails for marriage and motherhood.
Her new book 'Slob in the Kitchen" is not for the refined foodie that wants to spend hours preparing a jaw dropping meal, but for people that need to make dinner. Preferably one that the kids will eat. Highly recommend!

Full of self-absorption & name-dropping - could not make myself read the entire book. I bought it as inspiration for my mother who has Sarcoidosis & ended giving the book to Goodwill instead.

Everyone wants to be a star, but no one wants to literally crystalize internally from sarcoidosis. That is the life, onscreen and off, of Karen "Duff" Duffy.

For the unbaptised, if Match Game were still around, Karen Duffy is the kind of all-around celeb that would be the next Brett Somers - Wiseacre, Girl Friday, Broad-in-the-making. She also meets the pain of a chronic disease with a glee that most people could not summon.

While a little of the "Duff" persona goes a long way, the sincerity of "Karen" is good medicine, page by happy spoonful. --Laurel825

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.

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.

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.

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

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.

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.

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!

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.)

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.

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

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.

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.

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!