AARDA Calls ‘The Autoimmune Collection’ Update an ‘Ultimate Resource’ for Women

A new edition of  “The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment and Getting on with Your Life” received praise from the American Autoimmune Related Diseases Association (AARDA), which called the book “the ultimate resource for women with autoimmune diseases.”

Written by the award-winning journalist Rita Baron-Faust and lupus researcher Dr. Jill Buyon, the book elaborates on the latest diagnostic and treatment advances, mixing them with patient stories and practical tools for people living with systemic lupus erythematosus (SLE) and other autoimmune diseases.

When first published in 2003, the book was the first of its kind to address questions, both small and big, confronting women with an autoimmune disease. Since then, research has moved diagnostics and treatment forward. Today, scientists know of some 100 autoimmune diseases — many unknown at the release of its first edition — affecting a total of 50 million Americans, of which 75 percent are women.

“This book, which contains more than a decade of new research, is for those women — and their families,” AARDA, which is celebrating its 25th anniversary, wrote in a press release.

The book sorts out signs that may be important in what is often perceived as vague and unrelated symptoms, and teaches women how to handle doctors who tell them their disease is “all in their heads.” Women can also learn what diagnostics are available and how to interpret results, and the book provides an extensive overview of available and anticipated treatment options. It even goes into the particulars of how to find a specialist and navigate the Affordable Care Act’s healthcare system.

“Because autoimmunity is a major women’s health issue, it is a major ‘family’ issue,” said Virginia T. Ladd, founder and executive director of AARDA. “Autoimmune diseases represent the third largest cause of chronic illness among women in the U.S. and are among the top 10 leading causes of death among American women age 65 and younger. Yet, even as new research and groundbreaking biological treatments have changed outcomes for AD patients, too many physicians are still quick to dismiss women’s symptoms as something that is all in their heads.”

She added: “The updated version of this book will serve to educate women about an important area affecting their health, well-being and families, empower them to become their own advocates and to learn more about their own family history of AD, especially when family members can be affected by seemingly different diseases which may not even be recognized as autoimmune – but are.”

“By collecting patient diagnoses, clinical data, and perhaps results of laboratory and imaging studies, along with key demographics, this ‘big data’ endeavor will facilitate the sharing of information among medical experts and researchers, advance understanding of ADs and hopefully lead to better treatments and a cure for these closely linked illnesses,” said Noel R. Rose, MD, PhD, Department of Pathology at Brigham and Women’s Hospital Harvard Medical School and chair emeritus, Scientific Advisory Board, AARDA.