Autoimmune diseases tend to “cluster” in families – not as one particular disease, but as a general tendency to the autoimmune process and, consequently, different autoimmune diseases. (About one in five of us are affected.) There are 100 proven autoimmune disorders. Another 40 are possibly autoimmune-related, including ME/CFS, and fibromyalgia is often accompanied by autoimmune disorders.
The American Autoimmune Related Diseases Association (AARDA) wants to help you learn your family’s “AQ.” AQ is a play on “IQ” that stands for Autoimmune Quotient. It’s about knowing how likely you or a loved one is to develop an autoimmune disease, based on the prevalence of these diseases and your family history…
“Before an autoimmune disease patient receives a proper diagnosis, someone has to think of it first. While this may seem an elementary concept, it may be one of our most challenging obstacles, as most physician patient history forms do not ask whether the patient’s family has a history of autoimmune disease, even though we know that autoimmune diseases tend to cluster in families. Often this leads to years of misdiagnosis or no diagnosis at all,” according to AARDA President and Executive Director Virginia T. Ladd.
The AARDA’s ‘Know Your Family’s AQ” campaign empowers patients to take matters into their own hands and ensures that they receive proper care by learning the facts about their family history and filling in the gaps for physicians, whether they ask for them or not,” says Ladd.
AARDA offers the following advice to help you determine your family’s AQ.
1. Understand that autoimmune diseases constitute a major health crisis.
According to the National Institutes of Health (NIH), up to 23.5 million Americans suffer from autoimmune diseases. [More than 50 million, or 20 percent of the population, have a dominant genetic trait linked to autoimmune predisposition, according to the AARDA] and the prevalence of these diseases is rising.
In comparison, cancer affects up to 9 million; and heart disease, up to 22 million.
Collectively, autoimmune disease is one of the top 10 leading causes of death in women under 65 and represents over $100 billion in annual direct health care costs. Yet fewer than 13 percent of Americans surveyed in a recent AARDA poll could identify an autoimmune disease.
2. Get educated.
There are more than 100 known autoimmune diseases and an additional 40 diseases that are suspected to be autoimmune-related. [See brief descriptions of about 70 more-common examples in the Patient Information section of the AARDA website (http://www.aarda.org/patient_information.php).]
The diseases themselves can affect almost any part of the body, including the blood, kidneys, skin, heart, liver, lymph nodes, thyroid and the central nervous system. As a result, they cut across various medical specialties, such as:
• And hematology… among others.
A few examples of autoimmune diseases are endometriosis, multiple sclerosis, myasthenia gravis, scleroderma, polymyositis, vasculitis, lupus, Sjögren’s syndrome, autoimmune thrombocytopenia, type 1 or juvenile diabetes, Crohn’s disease and Graves’ disease.
Autoimmunity is the underlying cause of these diseases. It is the process whereby the immune system mistakenly recognizes the body’s own proteins as foreign invaders and begins producing antibodies that attack healthy cells and tissues, causing a variety of diseases.
3. Be aware that autoimmune diseases target women.
Women are more likely than men to be affected; some estimates say that 75 percent of those affected are women. These women are usually in the childbearing years.
In the past several years, autoimmunity has begun to be recognized as a major women’s health issue, with the Office of Research on Women’s Health at NIH recognizing it as such and the Society for Advancement of Women’s Health Research naming it as one of 10 diseases that most disproportionately affect women.
4. Know that autoimmune diseases run in families.
Current research points to a genetic component in autoimmune diseases. However, autoimmune diseases are not typical genetic diseases like, for instance, sickle cell anemia, where there is a specific gene mutation.
With autoimmune diseases, multiple genes are involved that collectively increase vulnerability or susceptibility. Thus, what is inherited is not one specific gene but several genes that increase risk. As a result, autoimmune diseases tend to “cluster” in families – not as one particular disease, but as a general tendency to the autoimmune process and, consequently, different autoimmune diseases. For example, one family member may have autoimmune hepatitis; another, celiac disease; another, rheumatoid arthritis. [More than 46 percent of fibromyalgia patients surveyed by Dr. Robert M Bennett, et al. also had arthritis, for example – see “An Internet survey of 2,596 people with fibromyalgia”, BMC Musculoskeletal Disorders, Mar 2007; Table 2.]
5. Do your own family medical history.
Given the family connection, knowing the health histories of other family members is critical. For example, if your grandmother or father or sister or uncle has an autoimmune disease, you could be more susceptible to developing one yourself.
Take an inventory of your family health problems, expanding your research beyond your immediate family to include grandparents, aunts, uncles, cousins and other relatives. Once you know your family history, share it with other family members and your doctor, who can then assess the possibilities with a degree of accuracy and order appropriate tests.
6. Keep a “symptoms” list.
People with autoimmune diseases often suffer from a number of symptoms that, on the surface, seem unrelated. In addition, they may have suffered from other seemingly unrelated symptoms throughout their lives. It is important, therefore, to make a list of every major symptom you’ve experienced so that you can present it clearly to your doctor. List the symptoms in the order of concern to you.
7. Realize that getting an autoimmune disease diagnosis is often challenging.
An AARDA study of autoimmune patients found that the average time for diagnosis of a serious autoimmune disease is 4.6 years. During that period, the patient typically has seen 4.8 doctors; and 46 percent of the patients were told initially that they were too concerned about their health or that they were chronic complainers.
One of the factors that makes getting a correct autoimmune disease diagnosis so difficult is that symptoms can vary widely, notably from one disease to another, and even within the same disease. Also, because autoimmune diseases affect multiple systems, their symptoms can often be misleading.
The medical community’s lack of knowledge of autoimmune disease compounds the problem. Even though these diseases share a genetic background and tend to run in families, most health questionnaires at doctors’ offices do not ask whether there is a family history of autoimmune disease.
8. Hold the power to protect your family’s future health and well-being in your hands.
Congratulations! By working through these steps and doing your homework, you now have the knowledge to determine whether you or your loved ones could be at risk for developing an autoimmune disease.
[Note: For much more information about autoimmune diseases, to ask questions, and to determine your family’s AQ, visit the AARDA Web site at www.aarda.org or call (800) 598-4668.]
Source: American Autoimmune Related Diseases Association website and news release, Mar 19, 2010