Virginia Ladd, AARDA President & Executive Director
Last month, at the first national conference in Washington, D.C. of the American Autoimmune Related Diseases Association (AARDA), experts across the country in several different specialty fields agreed on two things … there's still much they don't know and much that typical Americans also don't know about autoimmune diseases but should.
"Looking strictly at the numbers, autoimmune disease is right up there with cancer and heart disease as a major health issue in this country," says Virginia Ladd, AARDA president and executive director. "Yet we have a Roper survey and other key measures that clearly indicate that autoimmune disease is not receiving the recognition it deserves – to the detriment of the health and quality of life of the tens of millions of Americans and their families who cope with these illnesses every day."
And most of the people suffering from these illnesses are women. The numbers tell the tale:
- Three out of four autoimmune sufferers are women.
- Women are 50 times more likely than men to suffer from hypothyroidism (most commonly Hashimoto's Thyroiditis) and nine times more likely to suffer from lupus.
Other autoimmune diseases include Graves' disease (hyperthyroidism), multiple sclerosis and rheumatoid arthritis. According to the United States Department of Health & Human Services, chronic fatigue syndrome and fibromyalgia are not autoimmune diseases, but they often have symptoms that mimic autoimmune responses.
Dr. Elizabeth Pearce, an assistant professor of medicine at Boston University Medical Center, says "nobody really knows" why women are more susceptible to autoimmune problems. An endocrinologist, Pearce's research is in thyroid, particularly thyroid in pregnancy and mild thyroid dysfunction. While some experts speculate that female hormones, particularly estrogen, may play a role in triggering an autoimmune response, Pearce says, "Post-menopausal women are equally susceptible, if not more susceptible, to autoimmune diseases than pre-menopausal women, so it's probably not just as simple as a simple connection to estrogen."
Pearce defines autoimmunity as "a full family of diseases in which the body, instead of using the cells that are meant to fight infections and foreign bodies that are other than 'self,' will fight some kind of tissue that belongs to the body." In Hashimoto's, the body essentially attacks the thyroid, while in Graves' Disease, antibodies actually accelerate the thyroid and cause it to make too much hormone, she explains.
Could stress trigger an autoimmune response? "I get asked that a lot. And the answer is probably 'yes,' but there are no really good studies pinning it down," Pearce says. "We think it's probably likely, but it's a hard thing to study, obviously, because stress is so variable and comes in so many forms."
Another Boston thyroid expert, Dr. Erik Alexander, associate physician at Brigham and Women's Hospital, speculates that "there may be an inherent risk that women carry," which could be genetic in nature. He adds, "There's definitely an increased risk that if you suffer from one autoimmune illness you are at risk for others … They do tend to cluster in individuals or families."
L. Jo Parrish, vice president of institutional advancement for the Washington, D.C.-based Society for Women's Health Research, says one theory piquing the interest of researchers pertains to pregnancy. "Because women retain some cells from each pregnancy of the child they bear, perhaps this may be the body's reaction to the fact that there are cells not their own in their body. So this may be a reason that autoimmune diseases affect women differently than men."
The granddaddy of autoimmune diseases is probably lupus, and experts say lupus research may help answer questions related to many autoimmune maladies. "Because lupus can manifest itself in so many ways, research on lupus could have implications for many other diseases," says Duane Peters, vice president for advocacy and communications with the Lupus Foundation of America. "Lupus is what we consider to be the prototypical autoimmune disease, and certainly research on lupus will benefit the other autoimmune diseases that also disproportionately affect women." Peters describes lupus as "the most glaring example of the gender bias in diseases between men and women."
Lupus is an inflammatory affliction that can affect almost any organ system of the body. Gary S. Gilkeson, a professor at the Medical University of South Carolina in Charleston, is a rheumatologist specializing in lupus, and he acknowledges that 90 percent of his patients are women. He says the "best bet" is estrogen when it comes to identifying a culprit. "It's presumably related to estrogen, since the main predominance is during the reproductive years," he says.
One danger of lupus is that patients with milder forms of the disease may not know it, and thus fail to seek treatment. Symptoms may imitate those of other, less serious illness. Patients typically suffer fatigue, early arthritis, joint pain, fever, light sensitivity and rashes. Lupus can be fatal.
"Lupus has an underlying genetic basis, and there are certain environmental factors that trigger disease activity in people who are genetically susceptible to that," Peters says. "We believe that because of the hormonal difference between men and women that hormones do play a role in triggering lupus and may explain why the disease is nine times more prevalent in women than in men."
One research focus supported by the Lupus Foundation is in the area of epidemiology, he adds. "We don't fully understand the accurate incidence and prevalence of lupus among different populations – in the United States and throughout the world. How many people actually get lupus? How many people have lupus? What types of lupus do they have? The reason that this is important is that it helps us to understand who is impacted, how they are impacted and what are the different subpopulations of people with lupus," Peters explains.
Another research interest regards the validation of biomarkers, necessary to measure whether a treatment being tested in a clinical trial is actually working. Validated biomarkers for heart disease, for example, include blood pressure and cholesterol levels. Yet such measurable impacts aren't identified for lupus. That's why the FDA has not approved any new therapies for lupus in more than four years, Peters says.
Ladd with the AARDA notes, "Collaboration in research, education and awareness around autoimmune diseases as a group" should benefit sufferers of all autoimmune problems because "they share a common disease pathway and have a genetic predisposition."
The expectation is that the March seminar, which Ladd says she hopes will be the first of many, will help launch that collaboration.