The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On With Your Life
Authors: Rita Baron-Faust,Jill Buyon
A
UTOIMMUNE
C
ONNECTION
ESSENTIAL INFORMATION FOR WOMEN
ON DIAGNOSIS, TREATMENT, AND
GETTING ON WITH YOUR LIFE
Revised and Updated Edition
RITA BARON-FAUST, MPH
WITH
JILL P. BUYON, MD
New York
Chicago
San Francisco
Athens
London
Madrid
Mexico City
Milan
New Delhi
Singapore
Sydney
Toronto
Copyright © 2016, 2003 by Rita Baron-Faust and Jill P. Buyon. All rights reserved. Printed in the United States of America. Except as permitted under the United States Copyright Act of 1976, no part of this publication may be reproduced or distributed in any form or by any means, or stored in a database or retrieval system, without the prior written permission of the publisher.
1 2 3 4 5 6 7 8 9 0 QFR/QFR 1 2 1 0 9 8 7 6
ISBN 978-0-07-184122-1
MHID 0-07-184122-9
e-ISBN 978-0-07-183587-9
e-MHID 0-07-183587-3
Illustrations by Marina Terletsky
McGraw-Hill Education books are available at special quantity discounts to use as premiums and sales promotions or for use in corporate training programs. To contact a representative, please visit the Contact Us pages at
www.mhprofessional.com
.
For my Mother, who always believed in me. I miss you every day.
—RBF
Foreword by Virginia T. Ladd, President, American Autoimmune Related Diseases Association
1
Autoimmune Disease—Facing Our Intimate Enemy
2
Those Aching Joints—Rheumatoid Arthritis
3
The Shadow of the Wolf—Systemic Lupus Erythematosus
4
The Elusive Butterfly Gland—Thyroid Disease
5
The Body Snatchers—Scleroderma and Autoimmune Skin Disorders
6
More Than a Dry Spell—Sjögren’s Syndrome
9
An Attack of Nerves—Multiple Sclerosis
10
Weak in the Knees—Myasthenia Gravis
11
A Fury in the Blood—Antiphospholipid Syndrome, Immune Thrombocytopenia, and Vasculitis
12
Assault on the Liver—Autoimmune Hepatitis and Primary Biliary Cirrhosis
13
Fellow Travelers—Fibromyalgia, Chronic Fatigue, Endometriosis, and Interstitial Cystitis
14
Navigating the New Medical Maze
Afterword by Denise L. Faustman, MD, PhD
Appendix A: Where to Go for Help—Information and Support Groups
by Virginia T. Ladd
W
e at the American Autoimmune Related Diseases Association are delighted to present this updated and revised edition of
The Autoimmune Connection
. Rita Baron-Faust and Dr. Jill Buyon have distilled more than a decade’s worth of new research into autoimmunity to expand and enhance their groundbreaking overview of a disease category that affects more than 50 million Americans.
In the 25 years AARDA has been advocating for people with autoimmune diseases, there have been great strides in understanding and treating these diseases, in which the body attacks the very organs it is supposed to protect.
As the nation’s only nonprofit organization dedicated to bringing a national focus to autoimmunity as a category of disease and as a major women’s health issue, we have been pleased to offer
The Autoimmune Connection
at our patient forums, scientific meetings, and advocacy summits across the country. It has contributed greatly to our ongoing mission to educate patients, elected officials, and the medical and scientific communities about the more than 100 different autoimmune diseases and the toll they take on lives each day.
Among those afflicted with autoimmune diseases, 75 percent are women. In fact, these diseases represent the third largest cause of chronic illness among women in the United States. Even more alarming, autoimmune diseases are among the top 10 leading causes of all deaths among U.S. women ages 65 and younger. It’s no wonder that autoimmune diseases have been named a major women’s health issue and a research priority by the National Institutes of Health’s Office of Research on Women’s Health.
Even now, too few women know about autoimmune diseases or the threat they pose until they are faced with a diagnosis. The public, patients, and even the medical community suffer from a lack of information and a plethora of misinformation and myths about these disorders, making early recognition
difficult. Tragically, many women are not diagnosed until illness has progressed, and some become very ill before their symptoms are taken seriously.
Even as new research and groundbreaking biological treatments have changed outcomes for autoimmune patients, too many physicians are still quick to dismiss women’s symptoms. A 2015 survey conducted by AARDA and the National Coalition of Autoimmune Patient Groups (NCAPG) found that many women were still being labeled as chronic complainers in the earliest stages of their illnesses. The time wasted costs hundreds of lives, untold suffering, and billions of dollars in healthcare costs.
The updated edition of this book will make great strides toward educating women about an important area affecting their health, well-being, and families. It will encourage women to be their own advocates and to learn more about their own family history of autoimmune disease, especially when family members can be affected by seemingly different diseases (which may not even be recognized as autoimmune).
Giving women the facts and new insights into autoimmunity will provide reassurance that their symptoms are not an “all in your head” problem to be pushed aside but rather a problem that needs to be taken seriously—and that can be helped. In this book, women will learn how biological therapies for conditions like rheumatoid arthritis are now able to change the course of illnesses like RA that once meant certain disability and disfigurement.
The next stage of AARDA’s mission is the creation of the Autoimmune Disease Patient Registry Research Network—ARNet—a comprehensive central database of anonymous patient information, including diagnoses, clinical data, and perhaps even tissue and blood samples along with key demographics. ARNet’s database currently encompasses eight patient groups and provides information on almost 70,000 patients with 2.34 million data points.
It is our hope that this book will encourage patients and clinicians to contribute to this “big data” effort to fully understand and ultimately eradicate autoimmune diseases.
Progress is being made every day. This book will enable more women with autoimmune diseases to find help—and hope.
Virginia T. Ladd
President, American Autoimmune Related Diseases Association
T
his was a book literally “years in the making”—and years in the
re
making.
It has been a challenge to keep up with autoimmune disease research since the first edition of this book was published in 2002. Over the past decade I have attended countless medical meetings, talked to dozens of clinicians and researchers, and spoken with scores of autoimmune patients at educational forums. While research has advanced, new medications have been approved, and treatment strategies have improved, I find that one thing has
not
changed: the needs of women with autoimmune diseases for information, prompt diagnosis, and effective treatments that take their real lives into account. And, most important, to be listened to and
heard
by their physicians.
At the same time, a major change has taken place in the way we talk about these diseases. At scientific and medical meetings the terms
autoimmune
and
disease clusters
are now commonplace. When I was first diagnosed with hypothyroidism in 1971, no one ever said the word
autoimmune
.
It wasn’t until 1992 that I learned about autoimmune diseases when I covered the First Annual Congress on Women’s Health in Washington, D.C., as a medical journalist.
It was there I first met Virginia Ladd, founder and president of the then-fledgling American Autoimmune Related Diseases Association (AARDA). She has been a mentor and friend since then, and I cannot sufficiently express my deep gratitude to her for supporting this book. I’m privileged to speak alongside her as a national educator for AARDA.
A special shout-out to Sharon Harris and Pat Barber of AARDA and Cindy Carway and Stephanie Hornback of Carway Communications for their tireless work on behalf of AARDA.
It was also through AARDA that I met Dr. Noel Rose, whom I’d like to especially thank for his continuing help and support. He’s a gentleman and a scholar but, most important, a wise and compassionate physician.
Heartfelt thanks go to all the women who shared with me their personal experiences over the years: Kathleen Turner, who graciously took the time during her Broadway run in
The Graduate
in 2002 to talk with me; Hannah Wallace for sharing her story and the names of other women; Mary Kay Blakely, author of
Wake Me When It’s Over
, now a professor emeritus at the University of Missouri; Lori Silverman; Annemarie Johnson, who sadly passed away in 2014; Joy Simon-Palmer; and my old friend Ann Gold, as well as the scores of other women I have met at AARDA patient forums and advocacy conferences since the first edition of this book came out. I’m in your debt and in awe of your courage.
One note about these personal stories. They are included in this book not to criticize doctors but to demonstrate the very real problems many women still experience in trying to get an accurate diagnosis. I am also deeply grateful to the Logan Science Journalism Program at the Marine Biological Laboratory at Woods Hole, Massachusetts, for affording me the opportunity to attend a postdoctoral course on neuroimmunological diseases as a Fellow in 1997, which proved invaluable in researching this book.
There are so many people who provided resources and assistance during the years of research and writing that went into this book that it is impossible to thank them all. Special mention to: Bonny Senkbeil, Jocelyn Givens, and Erin Latimer at the American College of Rheumatology; Christine Chapman, and Francesca Russo in the press office of the European League Against Rheumatism; Aaron Lohr and Jenni Glenn Gingery at the Endocrine Society; Joan Young, founder of the Platelet Disorder Support Association; Mary Lou Ballweg, the indefatigable president and executive director of the Endometriosis Association; Phyllis Greenberger, president of the Society for Women’s Health Research; and to those at the National Multiple Sclerosis Society; the Myasthenia Gravis Foundation; the Arthritis Foundation; and the American Diabetes Association who have kept me up to date. Thanks also to my colleague Trudy Lieberman of the Association of Health Care Journalists, who graciously reviewed the health policy information in this book.
I am especially grateful to James Darrow, administrative director of the Division of Rheumatology at NYU Langone Medical Center, who facilitates my continued attendance at the annual NYU Seminar in Advanced Rheumatology and keeps me connected to the NYU online Health Sciences Library.
I also want to acknowledge St. Francis College in Brooklyn Heights and Dr. Kathy Nolan, who chairs the department of biology and health promotion, who gave me the opportunity to be an adjunct. Teaching introductory biology
and having to explain the immune system to my students gave me a wonderful refresher.
My agent, Vicky Bijur, always understood the concept of this book and recognized its potential from the outset. Vicky, thanks for never giving up on making an updated edition of this book happen.
Christopher Brown of McGraw-Hill and my former editor at Contemporary Books, Judith McCarthy, both understand the importance of educating women about autoimmune diseases and appreciate how these diseases can impact women during various life stages. Thanks to both of you!
What can I say about my coauthor, Dr. Jill Buyon? She’s a dedicated clinician and passionate researcher. When I first approached her with the idea of a book on women and autoimmune diseases years ago, she was immediately enthusiastic. When I became overwhelmed with other work, she spurred me on, despite the fact that she herself was knee-deep in writing research grants. Even as she assumed the chair of rheumatology at NYU Langone, Jill has made time for this book. She strives always for excellence and holds me to her own high standards. Ours was the first book on autoimmune diseases written expressly for patients, and I am proud that our efforts have paved the way for others that followed.
Of course, I could never have done any of this without the love and support of my husband Allen and my son Alex. They have cheered me—and cheered me on—through six books, studying for a master’s degree, and countless late nights working at my computer. I love you guys; you make it all worthwhile.
I only wish my mother were here to see this new edition on bookstore shelves. This is for you, Mom.
RBF
Above all, I wish to thank each and every one of my patients with SLE, who have taught me more about lupus than any textbook and to be humble, caring, and involved. These individuals manage to cope with the ever-present uncertainty of a chronic disease that can lie dormant for months to years only to explode at the most inopportune times.
Working on this book has certainly been a major departure from the basic and clinical research activities that I hold so dear. Despite hours of my obsessive editing and struggling with the right words to communicate to the lay public extraordinarily complex medial issues, some of which are rapidly evolving, Rita Baron-Faust continued to put up with me. I believe she has managed to capture the depth of autoimmune diseases in an extraordinarily
reader-friendly way. I salute her incredible tenacity in putting this omnibus book together once again and updating all the exciting recent discoveries that offer new hopes for our patients. I am confident that this final product will provide an invaluable reference to patients and their families.
On a personal note, I would like to thank my husband, Dr. Robert Clancy, who has put his heart and soul into pursuing the basic science that drives lupus. He has commented so many times that “putting out the fires in this disease can be hard.” Throughout the editing of this book, he reminded me that Excedrin works quite well just being in your pocket. I thank my son Shane for keeping me company in the wee hours of the night and trying to distract me by engaging our mutual interest in real estate, and my daughter, Chelsea, for her own extraordinary passion for science and healing, relentlessly inquisitive mind, and often uncanny insights. Finally I thank my best friend in the world, Joan Emerald Merrill, for always being “on call” for me and giving every success and failure the right perspective.
My contributions to this book are dedicated to the loving memory of my mother, Harriet Buyon, who took great pride in bragging to her friends whenever she found my name in print.
JPB