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List of Publications LFA SEAL OF APPROVAL MATERIALS Items with code # are available online at shop.lupus.org Updated September 2013 BOOKS After the Diagnosis: Transcending Chronic Illness by Julian Seifter, M.D., and Betsy Seifter, Ph.D. (approved 2011) In this often-inspiring book, the authors use case studies drawn from Julian’s decades as a practicing physician to explore the process of creative change in the way we think about chronic illness, and provide strategies for balancing being sick and being ourselves. After the Diagnosis speaks not only to the millions of people living with chronic illness, but also to their loved ones and caregivers. Julian Seifter is one of the leading kidney specialists in the country, as well as a professor at Harvard Medical School and chair of the Ethics Committee on Human Research at Brigham and Women’s Hospital in Boston. (Simon & Schuster, New York, NY; 2010) $25; 243 pp. Coping with Lupus Revised and Updated 4th Edition by Robert Phillips, Ph.D. (approved 2012) This is a new edition of one of the most popular books for people newly diagnosed with lupus. Dr. Robert Phillips, licensed psychologist and director of New York’s Center for Coping, answers a variety of lupus-related questions in the revised edition of his highly respected guide. Phillips offers provides insightful and much-needed information on lupus, including coping strategies, symptoms, treatment, and medications. (Avery Publishing Company, Garden City Park, NY, 2012)Available at the LFA online shop, shoplupus.org; paperback, $21.00; 489 pp. Item # 136813 Dancing at the River’s Edge: A Patient and Her Doctor Negotiate Life With Chronic Illness by Alida Brill and Michael D. Lockshin, M.D. (approved 2009) By exploring the bond between caregiver and patient, this sensitive account illustrates the day-to-day frustrations and emotional toll suffered by the chronically ill, as well as an understanding of the mental struggles and conflicts a conscientious doctor must face in deciding how best to treat a patient without compromising personal freedoms. In alternating chapters, the narrative explores the frustration, joy, despair, grief, and pain on both sides of the doctor-patient relationship. As a dual memoir, this book also traces the growth of a unique friendship over a span of decades. Schaffner Press, Inc., January 2009; hardcover, $23.95; 224 pp. Updated September 2013 Despite Lupus by Sara Gorman (approved 2009) In this book, the author allows readers a glimpse into her life with lupus, from diagnosis to seeking treatment to becoming proactive in her own care, and finally, to exploring the possibility of living a well-rounded healthy life despite having lupus. According to one reviewer, “Through firsthand knowledge, Despite Lupus gives all lupus patients a better understanding of not only who they are, but most importantly, who they can become, despite having lupus.” Includes relaxation techniques, bibliography, and list of works cited. FourLeggedPress, 2009. $19.95. Paperback, 207 pp. Signed copies of Despite Lupus are available at www.despitelupus.com. Books are also available on Amazon.com. Contact [email protected] for more information. Disability Handbook For Social Security Applicants Eighth Edition by Douglas Smith, Attorney at Law (approved 2012) This brand new 8th edition is an invaluable guide to understanding and navigating the Social Security Disability Insurance (SSDI) system. Used by thousands of people who have needed help filling out and filing disability insurance claims, the workbook includes an appendix with the latest changes to the SSDI regulations. The text includes chapters on what SSDI is, how the application process works, how to prove disability, and how to appeal an unfavorable SSA decision. The workbook also has work sheets, a “frequently asked questions” section, information on various Social Security Administration publications, and a section on what happens after you win benefit, including: overpayments, disability reviews, and returning to work. There is also an updated discussion of the pros and cons of applying for Social Security Disability benefits online. Physicians’ Disability Services, Inc. (2012). Paperback, 130 pp. Item # 136815 Fibromyalgia & Chronic Fatigue Syndrome: Seven Proven Steps to Less Pain and More Energy by Fred Friedberg, Ph.D. (approved 2009) The author of this encouraging and insightful book is a clinical psychologist and assistant professor in the School of Medicine at Stony Brook University, Long Island, NY. He also has lived with chronic fatigue syndrome for 27 years. His previous book on CFS described a variety of illness coping strategies; in this book he visits these in more detail, and offers them as actual health and life improvement techniques. Although this is not specifically about lupus, the seven steps in this book offer an improvement program that can significantly reduce pain and fatigue, and increase energy. (New Harbinger Publications, Inc., 2006) Paperback, 181 pp., $14.95 For Inquiring Teens With Lupus: Our Thoughts, Issues & Concerns (approved 2003; reapproved 2013) Illustrated in neon-bright colors, this booklet discusses subjects that matter to teens in language they can relate to, such as what lupus really is, how to share feelings with family and friends, changes in body and mood, and what the future may bring. Above all it offers encouragement and the power of positive thinking. Created and published by Hospital for Special Surgery Charla de Lupus (Lupus Chat) Program, New York City, NY, 2003.Made possible by the generous support of Rheuminations, Inc. Booklet, 20 pp., free. Call (866) 812-4494 for ordering information. Updated September 2013 Great Medical Care: The Handbook for Making Your Visit to the Doctor Better by Steve Feldman, M.D., Ph.D. (approved 2009) This readable and practical resource guide provides insightful information to help people make better informed medical decisions in an increasingly complex healthcare system. Helpful tips are provided throughout, and the author has created simple charts which will make excellent communication tools for both patients and doctors. The message throughout is the importance of patient-doctor communication in creating a more effective relationship. Reviewers especially appreciated the emphases on obtaining test results following each visit, and on encouraging patients to ask about a second opinion when there is a serious medical concern. (Medical Quality Enhancement Corporation Publishers, Winston-Salem, NC) Paperback, 56 pp. $7.00. Order by email: [email protected]. How Can You NOT Laugh at a Time Like This? Facing Illness with Humor, Creativity, and Grit by Carla Ulbrich (approved 2011) Singer/songwriter turned comedian and author Carla Ulbrich says having a sense of humor is essential to our health. Her book is a collection of short essays with titles like “The Top Ten Annoying Things to Say to Someone Who’s Just Been Diagnosed,” “My Other Body Is a Porsche,” and “A Good Vein Is Hard to Find.” Her candid insights, wisecracking commentary, handy lists, and hilarious song lyrics set to popular tunes encourage readers to face illness with courage and humor, and to thrive and celebrate life despite medical complications. (Tell Me Press, New Haven, CT; 2011) Paperback, 219 pp.; $14.95. I Still Dream Big: Stories of Teens Living with Chronic Illness by Penny B. Wolf, M.S.W. (approved 2010) This book captures the concerns, hopes, and emotions of 17 young people who are bravely meeting the challenges of living with chronic diseases. Whether living with lupus, juvenile-onset diabetes, Crohn’s disease, multiple sclerosis, or juvenile rheumatoid arthritis, they have one thing in common: they refuse to allow their disease to define them. Chapter topics include: Being Different; Independence Delayed; Talking to Your Doctor; Ways We Cope; and Words of Advice: Teen to Teen. Wolf explains, “The insights shared by the young people in this book are important not only to teens living with illness, but also to their parents and loved ones who so want to support them and understand what they are going through.” (AuthorHouse Press, 2010) Paperback, 137 pp., $15.95. It’s Your Health: Navigating American Health Care by Robert D’Antonio, Ph.D. (approved 2012) This small book contains a great deal of valuable information offered in easy-to- understand language to help you manage your health care. Based on a lifetime of experience, the author discusses how to optimize interactions and communications with health care providers, hospitals, and insurance carriers, and explains the role of the federal government. Topics include finding the right physician and understanding the diagnosis and the treatment plan, evaluating health insurance carriers, and the importance of being in control. No matter what level of understanding you have, this book will help Updated September 2013 you make the most of today’s complex health care system. (Self-published, 2011) 86 pp. Available in paperback for $9.95 at amazon.com/Robert-DAntonio-Ph.D. Loopy Lupus Helps Tell Scott’s Story (approved 2002; reapproved 2013) This book, written by Scott and his third-grade class, explains what it’s like to live with lupus. The story is told in Scott’s voice, for children reading the book, and in the voice of Loopy Lupus, for parents, teachers, and caregivers. (Lupus Foundation of America, 2002). Paperback, 34 pp. $8.95. Item # 136802-001 Hardcover Item # 136802-002 Lupus: My View After 35 Years by Norma J. Bogetto (approved 2010) “None of us chooses to have an illness, but I hope to demonstrate that an illness can have positive aspects,” writes Bogetto in the introduction to her informative and patient- oriented book. This book discusses every aspect of living with lupus, including chapters on symptoms, diagnosis, emotional stages, appointments and physician relationships, stress relief and pain management, life choices, medical costs, and benefits of disease. At the end of the book are helpful cooking hints and several pages of recipes.
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