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Thursday, January 12, 2012

Got Sjogren's? Get this! 



Book Review: "The Sjogren's Book, Fourth Edition", edited by Daniel J. Wallace, M.D.


Sjogren's syndrome is an autoimmune disease that, while not rare, is not widely known. Until tennis star Venus Williams revealed recently that she had been diagnosed with it, most of the general public had not heard of it. That is why this book, published in September, is so necessary.

Sjogren's occurs when the immune system attacks the body's sources of moisture, altering or even destroying function. The most common areas affected are eyes and mouth, but it can also be systemic, involving many parts of the body at once with varying degrees of dryness and/or inflammation. It is classified as a rheumatic disease in the same family as lupus and rheumatoid arthritis. It can be secondary to another disease, or occur as a primary disorder. And it is much more widespread than most would ever suspect, occurring in one of every 70 Americans.

"The Sjogren's Book" is weighty, with 35 chapters and close to 400 pages. But it is the most organized and complete volume I have ever read about the disorder. Each chapter is authored by one or more experts on the subject covered. All relevant fields of medicine are represented. It would be appropriate reference source material for both patients and medical professionals, and any reader would learn something new.

The first segment of the book provides a general introduction and addresses an important question: is Sjogren's truly a syndrome, a group of symptoms without a known source, or a disease, in which we know how the body is affected even if we don't know why it starts? This is the first publication I've read that says science now knows enough about Sjogren's to classify it as a disease. The signs and symptoms are measurable and fairly predictable, enough so that international diagnostic criteria has been established.

The ailment was named after a Swedish ophthalmologist 70 years ago who noted its effects on eyes, mouth and joints. Little progress was made as to discovering the cause until recently, when DNA and other research grew more advanced. The latest findings are covered in this fourth edition in a four-chapter segment on the pathophysiology of Sjogren's. While I must admit some of this information went over my brain-fogged head, what I did grasp was fascinating. And I found the generous sprinkling of illustrations and charts to be quite helpful in improving my understanding of the disease process. I think most medical professionals could benefit immensely from learning this updated material.

The next twelve chapters are dedicated to covering the vast array of symptoms and complications of Sjogren's. The eyes and mouth each have their own chapter, but there are also segments on the internal organs, the central nervous system, gastrointestinal problems, gynecological issues in women, lymphoma, the salivary glands and ears, nose and throat. Also, diseases which most commonly accompany Sjogren's are described. Anyone newly diagnosed needs to read this section because it answers many questions about what Sjogren's can and cannot do to the body. It could also help those who have had the disease a long time recognize whether a new symptom might be a manifestation of existing disease or a different medical problem altogether and seek an appropriate medical specialist if needed. I found it gave me some reassurance that I wasn't imagining certain changes in my functioning, and I was better able to relay these symptoms to my doctor.

Once one knows about the various manifestations of Sjogren's, the logical followup is: what can be done about it? There is no cure, so the focus is generally on symptom management and limitation of disease progression. There are 10 chapters in "The Sjogren's Book" dedicated to treatments. Of particular interest may be the segments on managing fatigue and chronic musculoskeletal pain, as these are problems not widely addressed by the medical profession but nevertheless may be significant. Complementary and alternative therapies are also included so as to present as many reasonable options as possible.

Depending on one's age at diagnosis, most people with Sjogren's can expect to have it for decades. Thus long-term coping skills need to be developed. The final of this book contains five chapters about living with the disease. Subjects include: quality of life; emotional issues; dealing with stress; and recommendations for sex, sleep, surgery and vaccinations. In 2009, Social Security recognized Sjogren's as a potentially disabling ailment, so there is a chapter that covers the effects of disability and what to do if you need to file for and/or continue to receive long-term benefits. Finally, there is a resource manual for web, print and media.

"The Sjogren's Book, Fourth Edition" is the go-to book for the info you need on the disorder, even if you have the previous volumes. I'm going to keep my copy right by the computer and refer to it often.

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