Diagnosing lupus: An autoimmune puzzle
Lupus is a complex autoimmune disease that primarily affects young women, but is not well understood by the public. An estimated 500,000 to 1.5 million Americans have lupus, while more than 16,000 Americans develop lupus each year. In a 2000 survey of Lupus Foundation of America (LFA) members, a dramatic statistic was brought to light: survey participants reported that it typically takes three or more doctors, and four or more years, for people suffering from systemic lupus erythematosus to finally receive a correct diagnosis. The LFA is dedicated to decreasing both the length of time and the number of physicians needed to diagnose lupus.
The American College of Rheumatology has issued a list of 11 symptoms or signs that would help distinguish lupus from other diseases. At least four or more of the 11 criteria should be present before a diagnosis of lupus is made, symptoms do not have to occur all at the same time, and may appear and then disappear. Lupus can affect any part of the body, so the disease’s physical presentation will be different in different people. And because lupus has an ever-changing array of symptoms, the patient’s personal medical history can provide crucial information for diagnosis. But no lupus diagnosis can be complete without laboratory tests. Unfortunately, no single test or marker appears only in a person with lupus, and different laboratories will often show different test results. Say a person’s employer changes health insurance providers, and a new lab must process the usual tests ordered by the physician. Can the results be accurately compared to the patient’s previous numbers and titers? Will a different result suggest an increase in a medication, or could a flare be mistakenly overlooked? Most importantly, unless the physician in charge knows to order these tests, to put together test results with medical history, to recognize skin symptoms as being part of a bigger medical condition, vital pieces of the diagnosis puzzle will be missing.
General practitioners and family physicians are all too often unfamiliar with lupus, its potentially life-threatening symptoms, and most importantly, its target populations.
How many people know that women of color are 2 to 3 times more likely to develop lupus, as compared to Caucasian women? Or that lupus occurs in children, teens, and men? We know of some men who have come perilously close to death because their physician never even considered that a male patient might have an autoimmune disease. The LFA is currently developing a physicians CME course on diagnosis of lupus.
We feel that affected individuals also have a role to play in early diagnosis. Researchers now believe that lupus has a hereditary disposition, with a “trigger” setting off the disease course. This means that knowledge of one’s family medical history can offer important clues when solving a diagnosis puzzle. Affected individuals also can participate in the success of their lab tests: by knowing which tests are commonly performed for a lupus diagnosis; by understanding what the tests will tell the physician; and by following directions when the tests involve special instructions, such as a 24-hour urine collection. There are a variety of opportunities to learn about lab tests if the patient is educated, motivated, speaks English, and knows how to use library and Internet resources. However, what about the individual from an under-served population who ends up in the lab with a handful of test request slips for a battery of blood tests, urine catches, and maybe an MRI? All they may know is that they are having their blood drawn and their urine collected and their head scanned!
We call upon primary care physicians to make lab test information available in their offices and also ask that laboratories have simple, written test information available, so that the patient can take the information and perhaps discuss it with someone else in his or her family. This type of proactive approach can go a long way toward fostering increased patient knowledge, including why lab tests are so important.
The LFA has recently formed a Lupus Industry Liaison Council (LILCO) to encourage companies to work with the organization to advance lupus as a national health priority. In addition, a new Lupus Awareness Month Partners Program (LAMPP) will encourage national organizations to join with the LFA to increase public awareness about lupus during National Lupus Awareness Month to be launched this October.
We invite you to contact the LFA for more information by calling 301-670-9292, or visiting www.lupus.org.
Sandra Raymond is president and CEO of the Lupus Foundation of America.
