DETROIT, October 24, 1997- Seventy-five percent of those afflicted with an autoimmune disease are women, according to Susan Wood, Ph.D., newly appointed Acting Deputy Assistant U. S. Secretary for Women Health, Department of Health and Human Services, National Institutes of Health. Despite their devastating human and economic toll, autoimmune diseases are among the least investigated, most difficult to diagnose, and physically and emotionally painful diseases that face Americans today, Dr. Wood said in her keynote address at a conference on autoimmunity organized by the American Autoimmune Related Diseases Association (AARDA) and co-sponsored by the Wayne State University School of Medicine and the U. S. Public Health Service Office on Women Health.

      Autoimmunity: A Women Health Issue, a national conference held in the Detroit area, attracted several hundred participants. The conference was presented to give women with autoimmune diseases information and coping strategies for living as healthfully as possible in spite of their illnesses.

      Autoimmunity, the underlying cause of over 80 diseases, including lupus, scleroderma, type 1 diabetes, rheumatoid arthritis, multiple sclerosis, autoimmune hepatitis, and thyroiditis, is not generally recognized as a women health issue, said Virginia Ladd, president and founder of AARDA. Women with these diseases can suffer significant damage as a result of not being diagnosed early in the course of their disease. A study conducted by AARDA shows that 65 percent of women diagnosed with a serious autoimmune disease had met with the implication that they were chronic complainers prior to being correctly diagnosed. According to speaker Stephen Balch, M.D, Director of the Jacquelyn McClure Lupus Center, in Atlanta, Georgia, the real problem with diagnosis of autoimmune diseases is that the time that a physician can spend with you is limited, and listening to the patient is the only way to diagnose most autoimmune diseases. Adding to the problem is the fact that the diagnostic tests for many autoimmune diseases are not standardized. Thus, many persons who may have milder forms of autoimmune diseases do not quite meet the established criteria for a particular disease. It may take a period of time for the diagnosis to be confirmed.

      Because diagnoses of most autoimmune diseases are difficult to make, and women with these diseases can look very healthy, the patients must help themselves get diagnosed. Women need to empower themselves with information, know their family history, and sort out and list meaningful symptoms, and, finally, identify a doctor with a reputation for listening and diagnostic skills, Balch emphasized. We are only just beginning to understand how autoimmunity affects women. Why is it that these diseases are understudied? The need for more basic autoimmune research is obvious, commented Ladd.

      According to speaker Judy Luborsky, Ph.D., Director, Endocrine Immunology, Rush Medical College, in Chicago, Illinois, autoimmunity may be the cause of 50 to 60 percent of unexplained cases of infertility. Women with infertility are not routinely screened for autoimmune diseases; therefore we do not have systematic data on the association of autoimmune disease with reproductive failure to autoantibodies and specifically to ovarian autoimmunity. Autoimmunity is also a major cause of miscarriages. Angelia Mosley-Williams, M.D., Department of Medicine, Wayne State University, Detroit, Michigan talked about antiphospholipid syndrome and its relation to miscarriages.

      Noel Rose, M.D., Ph.D., Professor of Molecular Microbiology and Immunology and Pathology, Johns Hopkins University, cited a recently published study: Autoimmune diseases are significantly understudied in terms of their prevalence (the number of people who suffer from them) and their incidence (number of new cases diagnosed each year). The report, which examined 150 studies of only 24 autoimmune diseases, found that nearly 10 million Americans have one of the diseases included in the report. Rose reported that various estimates have been made of the impact of these diseases from an economic point of view. This nation involves some 86 billion dollars of its health care money in the treatment of autoimmune disease. Were talking about a major health problem in the United States. Autoimmune disease in the aggregate is right up there with cancer and heart disease as major disease problems in this country, both from the point of view of the number of people involved and the amount of our health care effort that goes into autoimmune disease.

      Stephen Katz, M.D., Ph.D., Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, in a research update session, stated, Two of the hottest areas in medicine today are genetics and immunology. Advance in these areas will have a direct impact on our understanding of autoimmunity. With regard to genetics, the fact that autoimmune diseases can run in families indicates that the development of this disease has a genetic basis. Several genetic studies recently have identified genes that may play a role in autoimmune diseases. In September several institutes of the National Institutes of Health and The Office of Women Health Research asked the scientific community to submit proposals that focus on research looking for a genetic susceptibility for autoimmune diseases.

      Autoimmunity is the result of a misdirected immune system which literally attacks itself. Autoimmune diseases are not contagious nor related to cancer or AIDS. They tend to run in families and are debilitating and often life-threatening. These diseases often are a drain not only physically but also mentally. Author of several books on coping and chronic illness, Robert H. Phillips, Ph.D. Center for Coping, New York, told the audience, One of the biggest problems that women face when they are diagnosed or are living with a chronic illness is a loss of control. They feel like control has been taken away from them, and their medical problem is now controlling them. It is, therefore, very important to learn how to regain control of your life. One must become her own best advocate.

      AARDA is the nation only organization dedicated to bringing a national focus to autoimmunity as a category of disease and a major women health issue, and promoting a collaborative research effort in order to find better treatments and a cure for all autoimmune diseases