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.