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Named a major women's health issue by the Office of Research on Women's Health at the National Institutes of Health (NIH), autoimmunity is the underlying cause of more than 100 serious, chronic illnesses. It targets women 75 percent of the time.
The term "autoimmune disease" refers to a varied group of illnesses that involve almost every human organ system. It includes diseases of the nervous, gastrointestinal, and endocrine systems, as well as skin and other connective tissues, eyes, blood and blood vessels. In all of these diseases, the underlying problem is similar - the body's immune system becomes misdirected and attacks the very organs it was designed to protect. The fact that women have enhanced immune systems compared to men increases women's resistance to many types of infection, but also makes them more susceptible to autoimmune diseases.
Taken together, autoimmune diseases strike women three times more than men. Some diseases have an even higher incidence in women. In fact, of the 50 million Americans living with autoimmunity, 30 million people are women, some estimates say. Autoimmune diseases have been cited in the top ten leading causes of all deaths among U.S. women age 65 and younger.1 Moreover, these diseases represent the fourth largest cause of disability among women in the United States.2
Different ethnic groups are more susceptible to certain autoimmune diseases. In lupus, for example, African American, Hispanic, Asian and Native American women are two to three times more likely to develop the disease than Caucasian women.3 And 9 out of 10 people who have lupus are women.4
Autoimmunity: A New Disease Category
Unlike cancer, which is an umbrella category for a range of diseases (leukemia, breast cancer, prostate cancer, non-Hodgkin's lymphoma, et al.), autoimmunity has yet to be embraced by the medical community (and the public) as a category of disease. Because these diseases cross the different medical specialties, such as rheumatology, endocrinology, hematology, neurology, cardiology, gastroenterology, and dermatology, and because such specialties usually focus on singular diseases within their particular category, there has been virtually no general focus on autoimmunity as the underlying cause. It has been estimated that autoimmune diseases cost $86 billion per year.
Table I Female:Male Ratios in Autoimmune Diseases
Systemic lupus erythematosus
Primary biliary cirrhosis
Autoimmune thrombocytopenic purpura (ITP)
Autoimmunity and Women
Even though there is some universally accepted knowledge about autoimmunity, its victims -- mainly women -- have suffered from a lack of focus and a scattered research approach. For example, autoimmunity is known to have a genetic component and tends to cluster in families as different autoimmune diseases. In some families, a mother may have lupus; her son, juvenile diabetes; her sister, antiphospholipid syndrome; and her grandmother, rheumatoid arthritis.
Getting a proper diagnosis is sometimes as difficult as living with the disease itself. Victims face problems not only because physicians often don't think of autoimmunity, but also because of who they are, namely, women in the childbearing years. As a rule, this is a time in a woman's life when she looks healthy, though looks can be deceiving. Often, women who suffer from autoimmune diseases are not taken seriously when they first begin consulting their doctors. A woman's symptoms are likely to be vague in the beginning, with a tendency to come and go, and hard to describe accurately to her physician. In a typical scenario, she is often shunted from specialist to specialist and forced to undergo a battery of tests and procedures before a correct diagnosis is made, which can sometimes take years.
According to a 2001 survey by the Autoimmune Diseases Association, over 45 percent of patients with autoimmune diseases have been labeled chronic complainers in the earliest stages of their illness. This can be devastating to a young woman who may then begin to question her sanity as she tries desperately to find out what is wrong. Tragically, many of these patients suffer significant damage to their organs in the meantime and end up carrying this health burden with them for the rest of their lives because of the delay in diagnosis.
If the public, particularly women, and medical practitioners were more aware of the genetic predisposition to develop autoimmune disease, clearly there would be more emphasis on taking a medical history regarding autoimmune diseases within the family when presented by a patient with confusing symptoms. Earlier screening of these diseases could not only prevent significant and lifelong health problems but also actually prevent some autoimmune diseases.
An example is antiphospholipid antibody syndrome (APS). In this disease, the patient produces antibodies against phospholipids -- fat found in every cell wall. The major consequence of APS is blood clotting, which can cause stroke, miscarriages, migraine headaches, and clotting disorders. APS occurs by itself or may accompany many of the autoimmune diseases. It is a significant cause of strokes in women under the age of 35 as well as recurrent miscarriage. Yet it would be unusual for a patient with an autoimmune disease other than lupus to be checked for it. APS has also been indicated as a causative factor in cardiovascular disease in women. The fortunate fact is that APS can be treated simply with either a baby aspirin or other blood thinners which are given to prevent strokes, miscarriage, and blood clots. The sad fact, however, is that many patients who could be treated in such a manner are never identified until after they have had a stroke or miscarriage.
What's New on the Research Horizon?
There is a significant need for more collaboration and cross fertilization of basic autoimmune research. Research that focuses on the etiology of all autoimmune related diseases rather than a singular autoimmune disease will bring us to the root causes of these diseases rather than the superficial level of treating the symptoms after the disease has had its destructive effects. At the present time, there is very little focus on basic autoimmune research, even though one in five Americans has an autoimmune related disease.
On the positive side, while basic research has lagged, there have been some exciting breakthroughs in research that is focused on new treatments for autoimmune diseases. In fact, several therapeutic approaches are in Phase III clinical trials. For the most part, treatment therapies for autoimmune diseases have remained fairly constant for the past two decades with few changes. New treatment modalities, such as TNF inhibitors, are showing promise for several of the autoimmune diseases that fall into different clinical specialties, such as rheumatoid arthritis, a rheumatic autoimmune disease; Crohn's disease, a gastrointestinal autoimmune disease; and psoriasis, a dermatological autoimmune disease.
Autoimmune Diseases Association's Role
Autoimmune Diseases Association recognizes the need for more collaboration in research involving autoimmune diseases and the need for more basic research into autoimmunity as the underlying cause of these diseases. This, along with helping to raise physician and public awareness of autoimmunity as a category of disease so that early screening and prevention programs will one day be commonplace, is the primary mission of the Autoimmune Diseases Association.
1. Walsh, SJ, LM. Autoimmune Diseases: A Leading Cause of Death among Young and Middle-Aged Women in the United States. American Journal of Public Health. 2000;90:1463-1465
2. U.S. Department of Health and Human Services. Office on Women's Health. Women's Health Issues: An Overview. Fact sheet. May 2000.
3. Society for Women's Health Research and the National Women's Health Resource Center, Inc. Autoimmune Diseases in Women.2002.
4. National Women's Health Information Center. U.S. Department of Health and Human Services, Office on Women's Health. WomensHealth.gov/faq/lupus.pdf