The S.L.E. Lupus Foundation recommends the following books for lupus patients, friends, and family.
Suggested Reading: About Lupus
- The Challenges of Lupus: Insights & Hope by Henrietta Aladjem. Aladjem is a lupus sufferer herself (though she has been in remission for many years) and has written several books on the subject.
- Coping with Lupus: A Practical Guide to Alleviating the Challenges of Systemic Lupus Erythematosus by Robert H. Phillips, PhD. For patients and families to better cope with lupus, addresses medical, emotional, lifestyles, interpersonal relationships, sex, and pregnancy.
- In Search of the Sun: A Woman’s Courageous Victory Over Lupus by Henrietta Aladjem and Peter H. Schur, MD. A book for general readers about systemic lupus erythematosus, written independently by a patient and a physician, both of whom give their own perspective on the disease.
- Learning About Lupus: A User Friendly Guide edited by Mary E. Moore, PhD, MD, et. al. Explores all aspects of lupus from genetics and laboratory tests to its effects on various organs of the body; psychological effects; rehabilitation; physician-patient relationships; frequently asked questions.
- Living With Lupus by Mary Horowitz, MD, and Marietta Abrams Brill. A comprehensive guide to understanding and controlling lupus, including medical and lifestyle options that enable lupus patients to cope physically and emotionally.
- Living with Lupus: The Complete Guide by Sheldon Paul Blau, MD, FACP, FACR and Dodi Schultz. A comprehensive, well-written current book, provides in-depth information for lupus patients and caregivers.
- The Lupus Book: A Guide for Patients and Their Families, 3rd Edition by Daniel J. Wallace, MD. A practical guide for lupus patients and families that explains virtually every aspect of the disease. Provides valuable in-depth information to help people with lupus combat their illness.
- Lupus: Everything You Need to Know by Robert Lahita, MD, and Robert Phillips, PhD. In question-and-answer form, the authors address patients’ most frequent concerns. Covers all aspects of the disease.
- Lupus: The Facts by Graham R. V. Hughes, St. Thomas Hospital, London, UK. Practical advice for the patient about the disease, written by an authority in the field. Provides information on diagnosis, treatment, pregnancy, diet, and more.
- The Lupus Handbook for Women by Robin Dibner. Information on understanding and managing this disease; the goal of the book is to educate patients so they can work better with their physicians.
- Women and Autoimmune Disease: The Mysterious Ways Your Body Betrays Itself by Robert G. Lahita and Ina Yalof. This book discusses 16 different types of autoimmune diseases and how closely they can be to others, which can often leads to misdiagnosis.
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Suggested Reading: General Health
- Celebrate Life: New Attitudes for Living with Chronic Illness by Kathleen Lewis. Kathleen Lewis, RN, MS, CMP, LPC, has been diagnosed with lupus, fibromyalgia, and osteoarthritis. A medical psychotherapist and licensed counselor, she celebrates her life with chronic illness and helps others do the same through her counseling services and writing.
- Coping With Kidney Failure by Robert Phillips, PhD. A psychologist offers meaningful, sound, compassionate advice to those who must deal with end stage renal disease, dialysis, and kidney transplantation.
- It’s Not Just Growing Pains by Thomas J.A. Lehman, MD. A guide to childhood muscle, bone, and joint pain, rheumatic diseases and the latest treatments; contains a chapter on systemic lupus erythematosus.
- Making Sense of Fibromyalgia by Daniel J. Wallace, MD. A pain amplification syndrome, fibromyalgia is related to tension headaches, premenstrual syndrome, and chronic fatigue syndrome, but its status as a disorder is fairly new. This book on fibromyalgia is written by a rheumatologist for patients and professionals. The American Fibromyalgia Syndrome Association and the Arthritis Foundation have both endorsed this book.
- Sick and Tired of Feeling Sick and Tired by Paul J. Donoghue, PhD, and Mary E. Siegel, PhD. Describes the anguish that individuals with invisible chronic illness endure and offers them the means to cope with their illness; discusses how they can communicate with loved ones and doctors in a way that meets their needs.
- The New Sjogren’s Syndrome Handbook edited by Elaine K. Harris, Steven Carsons. A guide for patients by specialists in the diagnosis and treatment of Sjogren’s syndrome from the Sjogren’s Syndrome Foundation Inc.
- We Are Not Alone: Learning to Live With Chronic Illness by Sefra Kobrin Pitzele. The first generalized, comprehensive guide to coping with chronic illness, for the 50 million Americans who suffer from a chronic illness, including listings of support groups and helpful organizations.
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Suggested Reading: Children and Adolescents
- Are You Tired Again?…I Understand by Marilyn Deutsch, PhD. This book, with fun cartoon characters, takes children in an interactive workbook fashion through the experiences of two young children whose mother developed a chronic illness, lupus.
- Celebrate Me! by Lynda Farrington Wilson. A children’s storybook that fosters self-esteem through the awareness of differences and choices; helps in understanding the confusion and self-confidence issues that confront young children who are suffering from visible skin conditions and abnormalities.
- Loopy Lupus Helps Tell Scott’s Story About a Disease Called Lupus by Scott (a child with lupus). Written by a child with lupus for other children and their families who are affected by lupus.
- The Monster Under the Bed: Child-Rearing When a Parent Is Chronically Ill by Barbara Butler.
- When Mom Gets Sick by Rebecca Samuels. Written and illustrated by a 9-year-old, this is a compelling story based on the experiences of a sensitive and insightful young girl who makes the best from what could be a devastating situation.
- When Mommy Is Sick by Ferne Sherkin-Langer, Kay Life. In this bibliotherapeutic story, a distressed little girl expresses her feelings when her mother goes to the hospital. Time drags and the child thinks of her constantly. Her understanding father helps her to cross off the days until she can visit, and then takes her to the hospital.
- Young People and Chronic Illness by Kelly Huegel, Elizabeth Verdick. This book is a wise, practical, heartfelt guide for young people with chronic illness.
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For suggested online reading, visit lupus links.