Customer Reviews

Coping with a Myositis Disease

5 star:		(13)
4 star:		(1)
3 star:		(1)
2 star:		(1)
1 star:		(0)

 

 

When i started reading the book, i have found peace within myself. Jim K's "Coping with a Myositis disease, has shown that i am not alone, and what i am going through is real. His presentation was excellent, using personal stories, of which i can relate too. I have found in the last few days, people who have read the book know exactly what i am going through. I just left a copy with my Rhematologist. He looked at it and said he would read it too. I feel that Jims book has opened my eyes and i have started the acceptance stage of this illness. I was in denial for at least a year. Jim Has done a great job in his presentations of all the myositis' forms. I know now that what happens to me through the book is really real. I want to take this time to personally thank Jim for his effort and fine Job.

This book is unlike any other written for the Myositis patient or caregiver. It's a compliation of stories written by the patients themselves, in their own words. There is a section for each major type of Myositis (Dermatomyositis, Polymyositis, Inclusion Body Myositis, and Juvenile Myositis).

Each of the stories has their own value and rhythm and style; some are concise and factual, some are long and filled with emotion. Together, they create a tapestry of struggle and support and hope. The stories are verbatim accounts from patients; as a result, there are plenty of spelling errors and grammatical mistakes. Rather than detract from the stories, they add a sense of realness and honesty to them.

There is so little affordable information available about this disease that this book is an absolute must-read for anyone faced with it. Caregivers, too, can gain insight into what their loved ones are going through. Doctors could better understand their patients. Even sufferes of other, similar diseases would benefit from reading this book. Highly recommended.

When a person is newly diagnosed with a chronic disease as Inclusion Body Myositis (IBM), the world suddenly comes apart. Gone are your hopes, your dreams and aspirations.

We are scared beyond belief because we know there is no cure, no medication, no treatment for IBM. Not having any thoughts of this incurable disease, our lack of prepartion for the changes in our lives, our families, our lifestyles, our finances, the realization that life will never again return to what it once was.

The Myositis patients in this book talk about their respective disease with accuracy, sensibility, compassion, and practical knowledge that all good things must come to an end and we have to accept the day-by-day acceptance and endurance of the disease.

I understand that Mr. James Kilpatrick brought to fruition the idea of the book until it was actually in book form in just less than seven months. What an accomplishment!

Those Myositis associationals groups on the Internet should jump at the chance of offering this book to their memberships.

Best wishes to Mr. Kilpatrick and to the thousands of sufferers of having a Myositis disease.

Having worked for an organization that supports myositis patients and their families for more than three years, I feel confident in recommending this book to all those who suffer not only from an inflammatory myopathy, but any autoimmune disease.

The first-person accounts give the book a real, honest, down-to-earth account of what one might face when one of these illnesses strikes him/her or a loved one. Reading theses stories can help to eliminate the feeling of aloneness one experiences when diagnosed with a rare disorder.

Thanks to Jim for compiling this excellent reference and for all those who contributed their stories. You folks are wonderful!

I am in total agreement with all those who have posted. Thank you Jim for putting together this compliation of stories. Those of us who suffer from this awful disease (I have DM) have found the book extremely helpful in knowing that we are NOT ALONE. Just came back from the MAA Conference in Washington DC and the book was getting accolades from all who have read it. Those who haven't read it want to. Even the caregivers were very interested in reading it. People who don't understand what "we" are going through now have compassion of our aches and pains. We have all mentioned to Jim that another book would be great. I have already ordered an additional two books. One for my family/friends and other for my physician. Jim deserves a great big applause and thank you for helping all of us.

I want to personally thank Mr. James Kilpatrick, for his outstanding presentation of a Myositis patient's point of view. I for one know exactly what it feels like to have Dermatomyositis. When Mr. Kilpatrick asked for volunteers to share their personal story regarding Myositis, I jumped at the chance to give some insight, in hopes that it would help someone in the same predicament. Myositis is a scary disease, but the pain and agony it causes can be slightly relieved, knowing that there are others in the same boat. Once I read the book, I passed it onto others, so they could come to understand what our new life styles are really like. Both my primary physician and my rheumatologist were highly interested in this book. I was so moved by the various stories, that I volunteered to be our local state support group leader. Thanks, again for publishing such a moving and enlightening book.

As a person diagnosed with Signal Recognition Particle Antibody Syndrome, a very rare and agressive type of Polymyositis, I feel compelled to "warn" Myositis patients about this book. Yes, it does make patients realize others are experiencing the same
debililitating symptoms you are; however, I found this book to be VERY NEGATIVE. It doesn't list the positive aspects of this disease today--there is hope with ongoing research; knowledgeable specialists; medicines available to relieve symptoms; and effective therapies. I KNOW personally--a positive attitude is essential in successfully dealing with this difficult illness.

In two medical training centers, I first saw the book, "Coping with a Myositis Disease." The real life stories of those suffering from a Myositis disease was written from the heart of the writers, in their own words without editorial interference.

The book can not be praised enough for the benefits especially for new Myositis patients.

No wonder the book has a five star rating and first place Best Seller of Myositis books.

Finally, Mr. Kilpatrick was able to capture the common person's feelings about dealing with Myositis.

Thank you, Amazon.com, for making the book possible on the Internet.

This book presents the medical profession with an unusual opportunity to review the cases of a great number of patients that they never had to see or treat in order to gain a wealth of knowledge about this disease. The idea of the patients own story gives a strait from the heart approach to a disease that is so overlooked,and misdiagnosed by many doctors. Hopefully this book will be the beginning of an arrest and possible cure for such a silent and painful process that has stricken more people that we want to think about. I am very proud to have been a part of the book and to be associated with the author/publisher, Jim Kilpatrick. He also organized the wonderful support group in Dallas that has been such an inspiration to so many who's stories had gone unheard for too long. Thank you for such a contribution.

When I gave my story to be included in this book, it was explained to me that it would be in my own words. This made me a little nervous and I took pains to use proper spelling and grammar. Well, my published story in the book contains numerous spelling and grammatical errors which were not made by me. This is very distressing for me. I must not be the only one, because this seems to be a pattern throughout the book. Anyway, all this aside, this book is a must have for anyone diagnosed with myositis. The stories helped me so much. People have thanked me for my contribution. How I wish this would have been available when I was newly diagnosed! But I do feel a great need to set the record straight in that the words of the patients were published with grammar and spelling errors they did not make. This must have happened during editing or data entry. Still, the book is very readable.