Me & Sarcoidosis: A Lifetime Partnership

by Gilbert Barr Jr.

Book Overview

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... This description may be from another edition of this product.

• Format: Paperback
• Language: English
• ISBN: 0595224571
• ISBN13: 9780595224579
• Release Date: April 2002
• Publisher: iUniverse
• Length: 340 Pages
• Weight: 1.30 lbs.
• Dimensions: 0.9" x 6.3" x 9.1"

Customer Reviews

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.

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.

A True Patient's Perspective

As a sarcoidosis patient since 1989 I found it refreshing to finally read a story from a fellow patient such as myself. The story was very emotional for me but yet inspiring as I could relate to many of the experiences written about throughout the book. I would recommend this book to any patient with sarcoidosis, family member or caretaker. We need more stories like this!