Lupus is one of the most mysterious and debilitating diseases known to medicine – difficult to define, hard to understand and a challenge to live with and to treat. Lupus is an extremely complex chronic inflammatory autoimmune disease in which a triggering agent causes the person’s immune system to dysregulate and attack his or her own tissue affecting virtually any organ system of the body including the skin, joints, kidney, brain, heart, lungs, blood and blood vessels. Lupus is the prototypical autoimmune disease ranging from mild to life-threatening.
There is no known cause or cure for lupus. The disease is a leading cause of kidney disease, stroke and premature cardiovascular disease in young women and is highly individualized, extremely volatile, debilitating, life-diminishing, and potentially fatal. By the most conservative estimates, there at least 322,000 Americans have definite or probable lupus. The disease affects women 9 times more often than men, with 80 percent of new cases developing between the ages of 15 and 44 during the prime of life.
Lupus is an unpredictable condition in which symptoms come and go (flares) and complications can arise suddenly, frustrating patients and the physicians who treat them. No single test exists to diagnose lupus, resulting in many patients suffering more serious complications over months and years before a diagnosis is reached. Many people with lupus experience ongoing inflammation and anemia, which contributes to general fatigue, chronic pain, mood disturbances, poor sleep quality, and cognitive impairment. Fatigue is the most prevalent and incapacitating symptom experienced by about 85 to 92 percent of people with lupus, resulting in decreased physical and mental function, and 50 percent of patients identify fatigue as the most disabling symptom. Disease onset typically coincides with critical years for education and career advancement, meaning lupus profoundly disrupts working lives. Thirty-three percent of people with lupus in the U.S. are on work disability.
Despite the many challenges associated with lupus, there are many reasons for optimism. A lot of money is being invested in lupus research by the private sector, including the pharmaceutical industry, and more drugs for lupus are in development today than ever before. This point in particular is one reason why the Lupus PFDD Meeting is so important.
For more information on lupus, current treatments, research, and support, please visit the organizers’ websites.