May is Lupus Awareness Month and on May 20 specifically, health advocates and those directly or indirectly impacted by the disease “Put On Purple” to raise awareness and to support the millions of people who are affected by the disease. For far too long, many Americans have remained unaware that more than 1.5 million people, mostly women, are affected by lupus, and that it is the leading cause of kidney disease, stroke, and heart disease. How many people know that women of color are two to three times more likely to develop lupus than Caucasian women? Sadly, many in the communities most affected, and even those within the medical community, are far less educated about the signs and symptoms of lupus than other equally and less threatening medical conditions.
Lupus has been called “a mystery disease” by researchers and physicians. It is a chronic, autoimmune disease with no cure that can damage any part of the body, including skin, joints and organs. It can even lead to death. It can take up to six years to diagnose if the medical provider is not familiar with its symptoms. There is no cure for lupus but there is hope. With early detection, managed care, reducing stress, and following a healthy diet and exercise plan, individuals with lupus, especially women, can strive for optimal health.
The Directors of Health Promotion and Education (DHPE), along with other national and community-based organizations, is leading a campaign to increase awareness of the signs and symptoms of lupus, to improve rates of early detection and early treatment so that patients with this condition have a better chance of living long, healthier lives. The campaign targets women of color who are at an increased risk for lupus and focuses on educating public health professionals and primary care providers of the signs and symptoms of lupus as well. Individuals experiencing the following symptoms should discuss the possibility of lupus with their health care provider:
• Achy, painful or swollen joints
• Extreme fatigue or weakness
• Sudden, unexplained hair loss
• Photosensitivity or sensitivity to sunlight
• Chest pains
This May, DHPE and other partner organizations want to be sure that lupus doesn’t take the back seat but rather gets just as much attention as other chronic medical conditions that disproportionately affect women and minority populations. In the same way that we support awareness and the funding of research for other diseases that devastate families, we need many more community leaders, health care institutions, health educators and medical professionals to rally around this effort to raise funds and support lupus awareness activities. Secondly, there is a need for increased participation in clinical trials from within the African American, Hispanic/Latina, Asian and Native American communities so that we can better understand this disease and more effectively diagnose and develop treatment plans.
Especially in minority communities, it is well known that women are usually the backbone and the glue that keep their families together. So, there is even more at stake if we don’t bring lupus to the forefront of community health advocacy. We must all play our part to increase funding and education about lupus, early diagnosis and treatment, and participation in lupus research in support of the people we love.
Grab your camera, phone, or tablet and share your own “This is Why I Put On Purple” story with a photo! Be sure to share your organization’s Put on Purple participation on social media and use the hashtags: #dhpePOP and #dhpelupus. Whether you are living with lupus, caring for patients, researching a cure or know someone with the disease, it touches everyone. Join DHPE and the lupus community and learn the signs and symptoms of lupus today.
DHPE, a national public health association, was recently funded by the Office of Minority Health, US Department of Health and Human Services, to implement a national lupus health education program. To learn more about lupus, visit www.lupus.org. For more information on the DHPE LEAP Program, visit www.bit.ly/dhpelupus or email LEAP Program Manager Thometta Cozart, MS, MPH at email@example.com.
Steven Owens, MD, MPH, MA is director of Health Equity, Directors of Health Promotion & Education