In a little over a week you may notice an increase in the number of people wearing purple. On May 18th, Lupus advocates from across the country will put on purple attire to promote Lupus Awareness Month. This awareness campaign is needed – though lupus affects an estimated 1.5 million Americans, research has shown more than half of Americans know little or nothing about this disease.
Lupus is a chronic autoimmune disease with no known cause or cure. It appears without warning, developing most often between ages 15 and 44. People with lupus display a wide range of symptoms because it can attack different parts of the body. Warning signs include fatigue, skin rashes, joint pain, and hair loss.
Many lupus patients do not suspect they have a potentially disabling and life-threatening disease because symptoms tend to come and go, and different symptoms may appear at different times during the course of the disease. It takes an individual an average of four years and three doctors to get an accurate diagnosis. And once diagnosed, lupus can be expensive to treat. The average annual direct and indirect costs incurred by a person with lupus can exceed $20,000.
Further, lupus disproportionally affects women and minority populations. Approximately 90 percent of those with lupus are women and two to three times more frequently among African Americans, Asians, Latinos, Pacific Islanders, and Native Americans than among Caucasians.
Over the past decade, treatment and diagnosis have improved. But this disease needs greater attention. The causes of lupus are unknown; however, scientists believe hormones, genetics and environmental factors are involved. More research is needed to better understand the role of these factors in people with lupus. I’ve been working in Congress to increase understanding of lupus and examine ways to support researchers’ efforts to identify, treat and, hopefully, one day find a cure.
I have joined Representatives Tom Rooney (R-FL), William Keating (D-MA), and Ileana Ros-Lehtinen (R-FL) to form the Congressional Lupus Caucus. The Caucus will work to ensure that all Members of Congress understand the impact of lupus on individuals and their families, and to actively support the advancement of lupus research and increased awareness of lupus among the public and health professionals.
Awareness will aid in early diagnosis, which is crucial to prevent the long-term consequences of the disease. To learn more about lupus, please visit www.lupus.org.
Rep. James Moran (D) is Virginia’s 8th Congressional District Representative in the U.S. House of Representatives.