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.

 

 

 

Title: The Sjogren’s Book, Fourth Edition

Editor: Daniel J. Wallace, M.D.

Publisher: Oxford University Press

IBSN: 978-0-19-973722-2

 

Submitted by: Karen Brauer, Butyoudontlooksick.com, © 2012

 

Karen Brauer is a happily married woman in her forties living in a little house on the prairie. Her passions include: photography; classic and some modern literature; classic, foreign and some modern film; and music of all kinds. Her blog is called “browser life”:

http://browserlife.blogspot.com/

©2010 butyoudontlooksick.com
  • Teresa Floyd

    I hope to pick up this book very soon. I have had Sjogren’s for a number of years and was finally confirmed by biopsy a couple of years ago. I myself feel that Sjogren’s is a “Tag-A-Long” disorder. I have systemic scleroderma, hypertension, raynauds disease, fibro, DGD and failed back surgery syndrome. I’m sure there are a few more that I have not put down. Like brain fog and chronic fatigue and severe chronic pain. I am only 46 years old and on a large dose of Morphine and Neurontin to get me through the day. Some days the pain is a 5 (A good day) most others are 10+++ (Not so good). Glad there is another resource for sjogrens and the best thing you can do is read, read, read and be your own advocate.

  • Tonia

    I will definitely purchase this book. I have had so many problems because of the dry mouth and eyes and recently got relief for both issues. At first I could not figure out what was going on, but after doing some research came to my own diagnosis and informed rheumy. Rheumy’s definitely need to keep this book in their office, and they need to tell you what other signs/symptoms to look out for. Could have saved me thousands in tooth repair!

  • Christy Adams

    Dr. Wallace helped save my life. I was diagnosed w/ an aggressive type of systemic lupus. All the other MD’s gave me at most 5 yrs to live. 7 yrs layer still going strong. Since that time I have been diagnosed with sjogrens. Unfortunately, I am no longer in LA and under his care, the book is a must and I would support the investment whole heartedly, esp with new diagnosis. Good luck to all who battle w/ these nasty and unforgiving autoimmune diseases and thankful to Dr. Wallace to help us along the way!

  • http://Facebook P. A.

    I think I will pass on the latest update on this book. While the publisher is listed as Oxford University Press, it is still a publication of Sjogren’s Syndrome Foundation. SSF spends a lot of money sending out letters asking for donations and every publication is heavily laced with suggestions to “send money”, yet for all their efforts since 1983: semi-annual conventions to spread the word to the faithful, requests for money “in memory of” & “in honor of” and local fundraisers (Sip for Sjogren’s, catchy!), Sjogren’s remains an invisible disease (unless I smile too big and expose 1/3 of the roots of my teeth) with very little recognition by the medical community. It seems like we should be a little further ahead in not only treatment but acknowledgement by society. I clicked on the Amazon logo; the hardback is $26.26 (there are used, older editions available for less) and the Kindle edition is $19.25 (that is the highest price for a Kindle edition that I have seen in the 10 months that I have owned a Kindle). For all the information out there and the few drugs that might help, the chemical sensitivity that goes with autoimmune disease makes for very little help with the symptoms. It’s not enough to just have a diagnosis, money needs to be spent to educate the medical community. They don’t get their information from Amazon. Books at the point of publication are already 2 years behind the latest information, just the nature of the beast.

  • Aimie

    I was just dx in July. I had such dry mouth. for years the doctors and family blamed it on meds. A lab report showed I was positive and still it was missed. I saw brand new neuro and immediately said do you Sjogrens. I also have MS and fibro. Lupus might be the next dx it is just waiting to if I get the butterfly rash because lab work has been postive besides all the tenderness I have joint pain. If it happens no big deal. Life goes as a journey on path.

  • Kelly

    I’ve been wanting this book so badly. Your review (and a gift card I received for Xmas) finally got me moving. I just ordered it. I wish I could afford to buy my ex-rheum one, she really needs it.

  • Faith Chapman

    I’m sorry, one more comment. Brain Fog. There is a thing called Sicca Syndrome that affects the moisture producing glands and then there is Sjogren’s which is the systemic disease. That’s what I was taught anyway.

  • Faith Chapman

    Oops, it is a disease, an autoimmune disease. I considered it rare because you never hear of it.

  • Faith Chapman

    I was diagnosed 10 yrs ago. Was near death, had a bad infection going on after a sinus surgery and adenoid removal. Got thrush, turned gray, my head was just full of infection. I was finally put on prednisone and started getting better. I’ve had several flares since then. I can tell you it is very systemic. I see a rheumatologist every six months. Have fibro and raynauds, heart birth defect and have had two MIs and a stent procedure. Have osteoarthritis and have had a disc replaced in my back and a fusion that’s gone bad. I’m tired all the time. And can’t take any arthritis meds or meds for my Sjogren’s because of my heart. I’ve always read that it was a disease. The Sjogren’s foundation has good info. I will be buying this book. Thank you so much for the info.