Robert G. Lahita - Lupus Q&A: Everything You Need to Know, Revised Edition

T here is no more difficult disease to diagnose, understand, or treat than the disease called systemic lupus erythematosus. This may be because lupus is not one disease but many diseases grouped under one heading. It may also be because the disease can present itself to both physicians and patients in mysterious ways, throwing them off the track, leading them to think of other more common illnesses, and eluding standard diagnostic methods. Whatever the reason, lupus is complex and problematic.

This book was designed to answer the many questions you may have about this disease and its impact on your life. Many of the questions are based on the countless numbers of patients who enter our clinics and offices daily with long lists of questions, the letters that arrive weekly in the mail seeking answers, the questions we hear at conventions or meetings, or the sad phone messages that ask for help because my doctors dont understand the disease. This is not a companion to any textbook. It is written strictly for patients and is based on their needs and questions. The goal was not to educate doctors with the material in this book (although many will find it helpful) but rather to address patients very real questions. We also realize that despite the dozens of questions answered in the book, certain areas may have been inadvertently overlooked. However, our goal was to address questions that, according to our experience, are most on the minds of our patients.

Ironically, the disease lupus seems to have gotten more complex, not less, over the years. New knowledge about the immune system and its workings has led to other autoimmune diseases being added to the roster of problems that need resolution. For example, because of difficulties in classification, a disease such as autoimmune phospholipid syndrome is often given the label lupus. Some physicians label it lupus in order to give the disease a billing code acceptable for insurance reimbursement! Diseases such as autoimmune phospholipid syndrome have resulted in swelling numbers of lupus patients. The Lupus Foundation of America has estimated that some 2 to 2.5 million Americans believe that they have lupus, and that some 86 percent of Americans have heard of the disease. While these are staggering numbers, one must be cautioned to remember that they may reflect the fact that many illnesses that are not lupus are being called lupus. Hopefully, this book will help to clarify the reasons that the numbers of people with lupus are increasing.

Last, a bit of history is necessary to allow readers to understand this disease and its past. Lets review the timeline of lupus.

• Lupus got its name because it was originally thought to represent the wounds that resulted from being attacked by a wolf. The trademark butterfly rash was thought to be from the bite or scratches of a wolf.
• This butterfly rash on the malar part of the face (above the cheeks) was first mentioned in the thirteenth century.
• The actual term lupus erythematosus was first mentioned by a fellow named Cazenave in 1851.
• There was much confusion regarding the diagnosis of lupus until well into the twentieth century. It was often confused with tuberculosis, disseminated gonorrhea, and many skin disorders.