Dermatomyositis Books

This was a very interesting, although somewhat disheartening, book. It is a group of case studies told by the patients who suffer from myositis. Often the cases seemed quite hopeless, therefore, it was hard for someone also suffering the disease to have much hope. The book also should have been edited for grammatical mistakes.

There are very few publications out there providing supporting information for Myosis sufferers. This one provides a great insight into the disease as well as the specific variations ie (DM). The case studies are particularly interesting and useful. It's great to see how others are coping with their disease and how most are recovering well. This is an American publication, I have not managed to find any UK publications for this condition.

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.

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.

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.

I'm 19 and I've had DM since I was 2. This book (edited by my doctor Lauren Pachman) is extremely informative and has everything you need to correctly help you or your child. I highly recommend this book to anybody that has Myositis or anybody that is a parent or family member of somebody with any form of Myositis.

the book is very informative on this most complicated disease i recomend it highly

Exposed is a story that will tug at your heart strings. This is a nice hard back book that is a quick read.

The story is that of the author's, Helen Leung, and her disease known as Dermatomyositis, and Dermatomyositis is one of a group of acquired muscle diseases called inflammatory myopathies. The disease, which has a somewhat severe onset, affects both children and adults. Females are more often affected than males, Dermatomyositis is characterized by a rash accompanying, or more often, preceding muscle weakness. Eventually, people have difficulty rising from a sitting position, climbing stairs, lifting objects, or reaching overhead. In some cases, muscles further away from the trunk of the body may be affected later in the course of the disease. Problems with swallowing (dysphagia) may occur. Occasionally, the muscles ache and are tender to the touch. Affected individuals may also feel fatigue and discomfort and experience weight loss or a low-grade fever. (Being a nurse had to explain a little of the facts of the disease so you can come to an understanding of this disease and its effects).

The story begins while Helen is at a young age, she discusses her somewhat abusive family life, her illness, and her diagnosis and the hardship and struggles and the attempts to cure her. She visited many physicians both in New York and China. As the years pass Helen begins to accept her illness. She is very courageous and overcomes her disease, even though she spends the high school years confined to a wheelchair. She is strong and her will to overcome all that she faces is amazing, she talks of other students starring and whispering, but determined to be strong she uses all their stares and whispers to full fill her dreams and desires to succeed against it all.

I highly recommend this compelling read, and commend such a strong lady, both her and her book get 5 stars, and her story is an inspiration to us all.

I was very excited to read this book. This memoir is about a young girl who grows up with dermatomyositis (dur-muh-to-mi-uh-SI-tis), which is an uncommon disease marked by muscle weakness and a distinctive skin rash. It is a very quick read at only 142 pages, but is very fascinating.

Helen is diagnosed with the disease when she is very young. She describes how she functions with not being able to walk and at times not even being able to hold up her head. She describes the feelings of her family and her frustration at not being able-bodied. At times it is very intense and you can feel the anger and the rage that Helen has for the world and why she questions God about why she got this disfiguring condition.

I found that a lot of the things that Helen railed against were some of the same things that I was unhappy about when I was younger. One of the things I could identify with was not having a date for the prom. A lot of teens don't go to their senior prom. I think, as does Helen, that we as a society have put too much pressure on going to it. She remarks that she felt alone many times in her life even when she was with many people. I have felt that way also.

Pick up this book so that when you meet someone in a wheelchair or who is "different" than you, you can put yourself in their place and make their life a little bit easier for them. EXPOSED is a good, quick read that will give you empathy for others.

Reviewed by: Marta Morrison

If you are looking for a quick and easy read, that will leave your heart aching, I'd recommend you go get a copy of Exposed and sit down and read it.

The story is that of Helen, the author, and her life long struggle with the disease called dermatomyositis. The book starts with Helen at a young age in her borderline abusive family, moves on to her illness, her diagnosis and her parents' struggles and attempts to cure her. Throughout her childhood, she visited a mulititude of doctors; both in New York, and in China.

As Helen grows, so does her acceptance of her illness. Rather than succumb to it, she overcomes it. She goes through high school in a wheel chair, and while her peers aren't exactly kind to her, Helen uses their stares and whispers to fuel her desire to succeed.

Exposed is honest and raw; a tale about beating the odds that will stay with you for years to come.