Virginia T. Ladd
President & Executive Director, American Autoimmune Related Diseases Association
Although autoimmune diseases affect an estimated 50 million Americans, targeting women three times more often than men, they can be difficult to diagnose — and patients have reported seeing five physicians, over a period of three or four years before receiving an accurate diagnosis. To complicate the issue, once an individual develops an autoimmune disease, the odds of developing another are increased. While autoimmune disease was identified more than 60 years ago, it has been slow in taking its place among early-considered, identifiable illnesses.
Autoimmune diseases occur when the immune system’s normal responses go awry. In autoimmune diseases, the immune system attacks what it is designed to protect: the body’s own healthy cells and tissue. These diseases can affect almost every part of the body, from skin and eyes, to the brain, to the gastrointestinal and endocrine systems. Some of the symptoms shared by many autoimmune diseases include functional exhaustion, joint and muscle pain, low-grade fever, low blood counts, dry mouth, skin rashes, extreme hair loss and gastroenterology issues.
Where does one start in getting an accurate diagnosis? What questions should a patient ask? A good place to start would be to inquire whether the doctor has considered an autoimmune disease. Most intake forms ask about specific diseases, such as stroke, cancer, or arthritis; few ask about a family history of autoimmune diseases–one of the most important steps in diagnosis leading the doctor to consider an autoimmune disease.
If a person has unexplained symptoms that might point to an autoimmune disease, a good idea is to start with an internist who can refer to a specialist for treatment. Many blood tests can screen for autoimmune disease, but sometimes tests can be negative when an autoimmune disease is present or positive when it is not.
Diagnosis should be based on clinical findings (medical history, physical findings, test results, and current symptoms), not a simple blood test. To complicate diagnosis, sometimes an autoimmune disease will be in the beginning stage and not yet diagnosable. It often takes time and monitoring of the patient to make a diagnosis.
According to the American Autoimmune Related Diseases Association, finding a correct diagnosis can be frustrating for both the patient and doctor. The search may require both patience and persistence, but that search can prevent organ damage and lead to life-saving treatment, certainly worth the effort.