APS & Related Publications

Here you will find recommended reads on APS. For your convenience, we have also provided links to purchase the ones that are available on Amazon. The APS Foundation of America, Inc. does not endorse any of the books listed below. Most are recommended by other members.

Books on Lupus

The Lupus Handbook for Women

by Robin Dibner, MD & Carol Colman; Published in 1994 by Simon & Schuster; ISBN: 0671790315

Description: The Lupus Handbook for Women provides all the information a woman needs to understand the disease, its diagnosis, and the treatment. It will answer her questions and help her to work with her doctors in managing the disease.

Rheumatologist Dr. Robin J. Dibner, in clear and supportive terms, tells women what they need to know including:

• What lupus is, how it affects the body, and why women are particularly vulnerable to it (90% of Americans with lupus are women)
• The three different types of lupus (discoid lupus, systemic lupus erythematosus [SLE], and drug-induced lupus)
• How to get a correct diagnosis and understand the tests (because the symptoms are often mistaken for those of other illness, it can take three to five years to get a definitive diagnosis)
•  The pros and cons of the various conventional drugs and therapies
• What the new, experimental treatments are, whom they are for, and what their risks and benefits are
• How to use stress control, diet, and exercise to prevent flare-ups and maintain health
• How to keep lupus form interfering with a normal dating and sex life and with the development of healthy relationships
• How to have a safe, though high-risk, pregnancy

The Lupus Handbook for women also includes information on the major lupus research centers, support groups, and other sources of help and information.

Systemic Lupus Erythematosus (4th Edition)

by Robert G. Lahita; Published in 2004 By: Academic Press; 4 edition (May 12, 2004) ; ISBN: 0124339018

Editorial Review: From Previous Edition:”This book successfully links basic science with clinical medicine, providing a framework within which to understand this complex disease. As Lahita states in the introduction, ‘The history of discovery is now in the log phase of growth.’ The third edition of Systemic Lupus Erythematosus conveys the excitement and the breadth of this dynamic field. This volume will be an excellent resource for basic and clinical scientists, as well as for the students of immunology and rheumatology. The chapters are well-referenced and can be read independently- as befits a reference book.” -Jane E. Salmon, Weill Medical College, Cornell University, New York, USA (March 2000)

The Lupus Book: A Guide for Patients and Their Families

by Dr. Daniel Wallace; Published in 2000 by Oxford University Press; Rev & Expand edition; ISBN: 0195132815

Description:  Dr. Daniel J. Wallace is one of the world’s leading authorities on lupus, the co-author of the leading textbook, and an eminent clinician who has treated over 2000 lupus patients, the largest such practice in America. His The Lupus Book, published in 1995, was the first book written by a leading authority specifically for patients. It immediately established itself as the most readable and helpful book on the disease. Now Dr. Wallace has completely revised The Lupus Book, incorporating a wealth of new information. This revised and expanded edition discusses the newest breakthroughs in drug treatments as well as the most recent discoveries in cellular, genetic, and immunological research–all laid out in user-friendly language that any patient could understand. Readers will discover 10 new blood tests your doctor can do, over 30 new drugs introduced since 1995, an extensive table of herbs that can be used for the disorder, and a large section on cognitive therapy and biofeedback. There are new sections on topics such as cell signaling, lupus susceptibility genes, selective cox-2 inhibitors, newer immunosuppressive therapies, and osteoporosis. And as in the first edition, the book provides absolutely lucid answers to such questions as: What causes lupus? How and where is the body affected? Can a woman with lupus have a baby? And how can one manage this disease? There is also a glossary of terms and an appendix listing lupus resource materials. Over a million Americans have lupus and some tens of thousands of patients die every year from the disease. The new edition of The Lupus Book offers these patients and their families a wealth of reliable, up-to-date information that will help them manage the disease and live a happier life.

Coping with Lupus: A Practical Guide to Alleviating the Challenges of Systemic Lupus Erythematosus (Revised and Updated, 4th Edition)

by Dr. Robert H. Phillips; Published in 2012 By: Avery Publishing Group (April 3, 2012); ISBN: 1583334459

Description: A completely updated and revised edition that provides comfort, information, strategies, and advice for those living with lupus. There is no cure for lupus, so a diagnosis of this potentially debilitating autoimmune disorder is understandably disquieting. This new edition of Coping with Lupus answers all the important questions one might have and offers practical coping strategies to help those with lupus live their lives to the fullest. Dr. Robert Phillips, the founder and director of the Center for Coping, lends his expertise in dealing with the psychological aspects of chronic health problems to address a range of issues, including: The medical facts-what lupus is, and how it is diagnosed and treated Medications, nonmedical pain-control methods, exercise, and diet Lifestyle changes to maintain optimal physical and emotional health.

Lupus: Everything You Need to Know

by Robert G. Lahita, Phillips; Published in 1997 By: Avery (October 1, 1997); ISBN: 0895298333

Description: One of America’s leading medical authorities teams up with one of America’s leading psychological authorities to write this informative book on lupus. In six chapters written in Q&A format based on actual questions asked by patients, the authors describe diagnosis, symptoms, treatment, medication, and the overall history and impact of the disease.

Books on Fibromyalgia

Wired for Healing – Remapping the Brain to Recover from Chronic and Mysterious Illnesses

by Annie Hopper; Published in 2014 by Friesens; First edition (October 25, 2014); ISBN: 0993890105

Description: Annie Hopper had exhausted the medical system and was still suffering from disabling symptoms of multiple chemical sensitivities, fibromyalgia and electric hypersensitivity syndrome. Hopper deduced that a toxic trauma had over-activated threat and protective mechanisms in her brain that were keeping her body stuck in a cycle of chronic illness and inflammation. In her ensuing search for healing, she created The Dynamic Neural Retraining System (DNRS) program – a drug-free, neuroplasticity-based approach to remap neural pathways in the limbic system. Since 2008, the program has helped countless people recover from many chronic conditions that have baffled the medical system for decades, such as Multiple Chemical Sensitivities, Fibromyalgia, Chronic Fatigue Syndrome, Chronic Pain, Food Sensitivities, Electric Hypersensitivity Syndrome, Post-Traumatic Stress Disorder, Depression and Anxiety, Irritable Bowel Syndrome, Postural Orthostatic Tachycardia Syndrome, Inflammatory Conditions and other Chronic Illnesses.

Wired for Healing; Remapping the Brain to Recover from Chronic and Mysterious Illnesses, is Hopper’s account of the innovative science behind DNRS and sheds light on how trauma causes the brain to disorganize neural circuits. Hopper also shares her personal recovery story as well as triumphant stories of recovery from people who have been liberated from chronic and mysterious illnesses through remapping the brain.

The book is not a replacement for the Dynamic Neural Retraining System™ DVD program or the In-person program.

Books on Chronic Illness

You Don’t Look Sick: Living Well With Invisible Chronic Illness

by Joy H. Selak, Steven S. Overman; Published in 2005 by: Haworth Medical Press (March, 2005); ISBN: 0789024497

Description: You Don’t Look Sick!: Living Well with Invisible Chronic Illness chronicles a patient’s true-life stories and her physician’s compassionate commentary. This warmhearted resource helps you focus on building a meaningful life that contains illness as opposed to a life of frustration and fear. Designed for patients at all stages of the chronic illness journey, this book is also illuminating for caregivers and loved ones.

A Delicate Balance: Living Successfully with Chronic Illness 

by Susan Milstrey Wells ; Published in 2000 by HarperCollins Publishers (July, 2000); ISBN: 0738203238

Editorial Reviews: “Chronic illness doesn’t come with an instruction manual,” says Susan Milstrey Wells–so she wrote one. Afflicted with Sjogren’s syndrome (an autoimmune disease that dries the eyes and mouth), fibromyalgia (a painful muscle disorder), and interstitial cystitis (a chronic inflammation of the bladder), she knows the ins and outs of coping with chronic illness. In A Delicate Balance, she provides a compelling mix of useful information and real-life stories (including an appendix of resource numbers for various medical and self-help organizations) to help others find the will and the way to survive and thrive.

Wells characterizes the onset of a chronic illness as the beginning of a journey toward understanding, accepting, and healing, and she organizes her book to help lead the reader on that journey. The first few chapters deal with the psychological stages of illness and the perseverance that’s often needed to get an accurate diagnosis and find a suitable health care partner. Middle chapters detail the search for treatment and the effects of chronic illness on personal relationships and the ability to work. The final chapter offers the optimistic view that chronic illness is a gift–albeit one that you don’t want and can’t give back, but that will ultimately teach you many important life lessons. Yes, chronic illness changes your life, she writes, but such change is not necessarily bad–and having a guide like this can help you through it. —Nancy Monson

Books on Other Autoimmune Diseases

Living Well with Autoimmune Disease

by Mary J. Shomon; Published in 2002 by HarperResource; 1st edition; ISBN: 0060938196

Description: Autoimmune diseases affect 50 million Americans, mostly women, who frequently remain undiagnosed and untreated, or are treated ineffectively. Living Well with Autoimmune Disease helps readers pinpoint symptoms, find the right practitioner, and learn cutting-edge approaches to reduce symptoms and reverse their disease.

Author Mary Shomon, who has the immune disease Hashimoto’s thyroiditis, explains how the immune system is supposed to work, and what can go wrong. Then she discusses more than 20 specific autoimmune diseases—such as chronic fatigue syndrome, inflammatory bowel disease, lupus, thyroid disease, Graves’ disease, rheumatoid arthritis, type 1 diabetes, fibromyalgia, scleroderma, and multiple sclerosis. For each, she covers symptoms, diagnosis, and treatment.

Thriving With Your Autoimmune Disorder: A Woman’s Mind-Body Guide

by Simone Ravicz Ph.D. M.B.A.; Published in 2000 by New Harbinger Publications; ISBN: 1572241896

Description: Women facing chronic pain and illness due to multiple sclerosis, rheumatoid arthritis, chronic fatigue, and other autoimmune disorders have a new place to look for encouragement. In this comprehensive and caring guide, Simone Ravicz presents a wide range of suggestions for not merely enduring illness but finding ways to thrive in spite of it. Ravicz herself suffers from autoimmune disorders. As she researched her own diseases, she encountered a shocking lack of helpful information and resolved to gather everything she’d learned for others to use. From tackling inner demons to addressing stress, diet, exercise, and medication, Thriving with Your Autoimmune Disorder outlines a complete self-help course for optimizing every day.

The Sjogren’s Book (4th Edition)

by Steven Carsons (Editor), Elaine K. Harris (Editor); Published in 2011 by Oxford University Press (October 3, 2011); ISBN: 0199737223

Description: Afflicting one in seventy Americans, Sjögren’s syndrome is an autoimmune disease that commonly causes dryness of the eyes, mouth, and nose, and that can lead to complications including profound fatigue, depression, and lymphoma. While there is no cure for Sjögren’s, much can be done to
alleviate the suffering of patients. This extensively revised handbook offers everything you need to know to cope with this disease.

The Sjögren’s Book, Fourth Edition is a comprehensive and authoritative guide, produced by the Sjögren’s Syndrome Foundation and its medical advisors and edited by physician Daniel J. Wallace, a leading authority on autoimmune disorders. This expanded edition provides readers with the best medical
and practical information on this disorder, bringing together the current thinking about Sjögren’s in an easily readable and understandable book, with an entirely new section on lifestyle issues aimed at improving the quality of life for Sjögren’s sufferers. With more than thirty chapters written by
leading experts, the handbook illuminates the major clinical aspects of the syndrome and is loaded with practical tips and advice. Indeed, it offers a wide-ranging look at the many faces of Sjögren’s, covering diagnosis, the various organ systems that can be affected, the possible psychological problems, and the many treatment options, as well as a concluding chapter listing the web, print, and media resources available. It is a valuable aid that patients can use while discussing their illness with their physician and an excellent resource for family members. And because Sjögren’s is greatly underdiagnosed, this handbook is a particularly valuable resource for healthcare professionals.

Recognized as the bible for Sjögren’s suffers, this reliable and informative guide is the first place for patients to look when they have questions about this little known but serious chronic disease.

Raynaud’s Phenomenon 

by Jay D. Coffman; Published in 1989 by Icon Health Publications ; ISBN: 0195057562

Description: This book presents the most up-to-date knowledge concerning Raynaud’s disease, an autoimmune disorder distinguished by well-demarcated blanching or cyanosis of one or more digits on exposure to cold, that occurs in episodic attacks. Especially common among young women, researchers estimate that the phenomenon may affect up to 10% of the female population. The volume provides coverage of the disease as a primary illness and as the secondary result of another disorder. The only available text on Raynaud’s, the book includes a comprehensive discussion of the physiology of finger blood flow, and coverage of both old and new treatment modalities. Readers will find full information on the anatomy of the disease, the clinical picture, prevalence, diagnosis, prognosis, pathology, pathophysiology, and the author’s personal treatment preferences, which are backed by 30 years of professional experience with peripheral vascular diseases.

Other Related Books

The Coumadin Cookbook: A Guide to Healthy Meals When Taking Coumadin (4th Edition)

by Rene, Md Desmarais, Greg Golden, Gail Beynon; Published in 20o5 by: Marsh Pub Co; ISBN: 0966430824 or 0966430816

Description: If you are on Coumadin patient, or if you are taking any other anti-coagulant, the amount of Vitamin K you consume each day is crucial to a stable PT/INR. The prothrombin time/INR is the test your doctor uses to make sure your Coumadin dose is within the desired therapeutic range.

A stable PT/INR is crucial to your good health.

• Eat food you thought you could no longer eat on a daily basis!
• Entertain family and friends and eliminate the guesswork when planning meals.
• Restaurants can be fun again! Take with you the list of foods low in Vitamin K (located in the back of the book)!

If you or a family member are using Coumadin (warfarin sodium Tablets, USP) Crystalline or any of the Coumadin anti-coagulants, then take a look inside.

This book will be a constant reference for preparing meals and dining out that you will use again and again.

Coping With Prednisone and Other Cortisone-Related Medicines : It May Work Miracles, but How Do You Handle the Side Effects?

by Eugenia Zukerman, Julie R. Ingelfinger; Published in 1997 by St. Martin’s Press; ISBN: 0312155026

Description: From Library Journal: Prednisone has been dubbed a “wonder drug” because of its effectiveness in treating everything from asthma and rheumatoid arthritis to kidney disease and organ transplants; however, long-term use may cause side effects such as bloating, weight gain, and depression. Zukerman, a renowned flutist and arts correspondent for CBS’s Sunday Morning, discovered prednisone’s down sides when she took it to treat a rare lung disease. With her sister, a physician at Massachusetts General Hospital, Zukerman has written an empathetic, easy-to-understand, and factually accurate guide that offers suggestions, recipes, and exercises for relieving the drug’s unpleasantness. She includes additional information about the chemistry, preparations, dosage, and a bibliography about the medication. Despite a few generalizations (rheumatoid arthritis is serious but not life-threatening), this work is recommended for consumer health collections, although readers taking the drug will want to buy their own copies. A more thorough source for libraries is the annual Complete Drug Reference 1997 (St. Martin’s, 1996), which covers 10,000 drugs.

Mosby’s Drug Guide for Nurses (6th Edition)

by Linda Skidmore-Roth; Published in 2004 by C.V. Mosby ; ISBN: 0323030602

Description: Mosby’s Drug Guide for Nurses, 6th Edition is a portable, current drug handbook containing information on more than 60 drug classifications and 4,000 individual generic and trade name drugs. Developed to meet student needs, this handbook includes detailed coverage of IV drugs; extensive coverage of interactions between drugs, drug classes, herbs, foods, and lab tests; a full-color drug identification guide; and a drug classification section covering groups of drugs by function. A disorders index helps the student locate information about drugs commonly used to treat more than 70 disorders. Special features promote safe medication administration and prevention of drug errors, including identification of high alert drugs, Do-Not-Crush and Nursing Alert icons, special Do-Not-Confuse headings, and guidelines for overdose treatment. Combination drugs are covered in an extensive appendix listing alphabetical brand names along with the products’ generic components and dosages.

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