Rita Baron-Faust - The Autoimmune Connection: 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.

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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

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For my Mother, who always believed in me. I miss you every day.

RBF

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 decades 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 nations only nonprofit organization dedicated to bringing a national focus to autoimmunity as a category of disease and as a major womens 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. Its no wonder that autoimmune diseases have been named a major womens health issue and a research priority by the National Institutes of Healths Office of Research on Womens 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 womens 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 seriouslyand 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 AARDAs mission is the creation of the Autoimmune Disease Patient Registry Research NetworkARNeta comprehensive central database of anonymous patient information, including diagnoses, clinical data, and perhaps even tissue and blood samples along with key demographics. ARNets 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 helpand hope.

Virginia T. Ladd

President, American Autoimmune Related Diseases Association

T his was a book literally years in the makingand years in the remaking.

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 wasnt until 1992 that I learned about autoimmune diseases when I covered the First Annual Congress on Womens 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. Im 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 Id like to especially thank for his continuing help and support. Hes 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