Books for self advocacy
Updated: May 21
Too many patients are told:
"Sjogren's does not cause ___"... about a common Sjogren's feature
"Sjogren's- is not serious /is not systemic/ does not need special care."
Dr. Vivino's new book ( item 2, below) is especially helpful for times when dismissive or incorrect statements such as these are made by clinicians.
All three of the following books were written by top Sjogren's experts. While clinicians may rationalize being skeptical about information coming from the internet (regardless of the source), it is hard for them to argue with premier Sjogren's specialists.
1. The Sjogren’s Book, Fourth Edition by Daniel J Wallace, MD (2012)
An excellent resource for both patients and clinicians. While not as detailed as Dr. Vivino’s book, it is easier for patients to read and understand. The information remains largely up to date as of 2020. The book is a good general reference.
A new edition is expected to come out later this year.
2. Sjogren’s Syndrome: A Clinical Handbook by Fredrick B Vivino, MD. (2020)
In-depth information for clinicians. Dr. Vivino, the lead author and editor, is a preeminent Sjogren’s researcher and clinician. This book clearly demonstrates that Sjogren’s is a complex, serious, systemic disease.
While a bit expensive and technical, the Clinical Handbook provides a nearly comprehensive reference that can be carried to medical, dental, and eye appointments. Some commonly overlooked Sjogren’s features are covered in detail, such as GI manifestations, dysautonomias, peripheral neuropathies, and CNS Sjogren’s.
Important clinical areas that are not covered in detail in Dr. Vivino's book:
· ENT (head and neck): Parotid swelling in adults, chronic sinusitis and chronic cough
· Pregnancy, gynecologic and urologic complications.
· General systemic features. Physical fatigue, cognitive fatigue/brain fog, and widespread muscular pain are touched on in chapters 10, 11, 12, and 15. However, these important features are not addressed in a comprehensive fashion.
General Systemic Features are addressed in Dr. Wallace’s book above (Chapter 23) and in the next book (item 3, below), edited by Wan-Fai Ng (see chapter 5).
Patients may not understand all of the medical terms in Dr. Vivino's book, but it can be quite useful for self-advocacy. One strategy is to copy the pertinent chapter(s) or sections, along with the cover page, and give these to your clinician. This can be particularly helpful for clinicians who are unfamiliar with certain Sjogren’s features.
3. Sjogren’s Syndrome, edited by Wan-Fai Ng, MD (2016)
A small, affordable “Sjogren’s in a nutshell” book for clinicians. Dr. Ng is a UK rheumatologist and leading researcher with a special interest in Sjogren’s fatigue (Chapter 5). When reading Chapter 5, keep in mind that in 2020 we now understand that “fibromyalgia” is often caused by a Sjogren’s small fiber neuropathy, and physical fatigue is currently understood to have a biologic basis (88).