by Jamila Rashid, PhD, MPH, and Frances E. Ashe-Goins, RN, MPH
Systemic lupus erythematosus (lupus or SLE), a debilitating autoimmune disease, provides a vivid example of the health challenges faced by women, especially minority women. Women are nine times more likely to develop lupus than men, and black women have a threefold higher risk than non-Hispanic white women. Hispanic, Asian and Native American populations are also at higher risk.
It is estimated that as many as 1.5 million Americans, mostly minorities, are affected by lupus. Even with this prevalence, lupus is still misunderstood by many, including health professionals, and diagnosis is often delayed. According to a 2002 survey of Lupus Foundation of America members, the average person with lupus will spend four years and see three physicians before a correct diagnosis is obtained. These are four years that could be spent in effective treatment for this devastating, potentially deadly autoimmune disease.
With Knowledge Comes Hope
When diagnosed early, lupus can often be well managed, but too many health care providers have difficulty recognizing the signs and symptoms of lupus. This difficulty can be attributed, at least in part, to the variety of lupus symptoms that are also common to many other diseases. In addition to the well-known butterfly-shaped facial rash often seen in patients with lupus, other signs and symptoms may include:
- Joint pain and swelling
- Skin rashes
- Cognitive dysfunction including difficulty focusing, memory loss and depression
- Hair loss
- Pleurisy and/or pericarditis
- Abnormal blood clotting
- Ulcers of the mouth and/or nose
Many of these symptoms mimic other diseases that are commonly seen in a primary care setting, contributing to the difficulty in diagnosing lupus. When some of these symptoms are present and do not resolve, especially in women of childbearing age, lupus should be considered.
Once lupus is suspected, primary care practitioners should refer patients to a rheumatologist for final diagnosis and ongoing treatment. Patients with lupus who have optimal outcomes have primary care physicians who work in partnership with rheumatologists and other specialists that may be required. Due to the systemic nature of lupus, a patient with lupus may need a nephrologist, neurologist, cardiologist and/or dermatologist. The primary care provider plays a critical role in coordinating this medical team and fostering communication among the specialists.
The Lupus Initiative: A Road to Knowledge
The Office of Minority Health and the Office on Women's Health are pleased to collaborate with the American College of Rheumatology on the Lupus Initiative (TLI), a program aimed at increasing student and medical professional knowledge about lupus and promoting early detection and effective treatment of the disease for all patients, regardless of age, gender, race, ethnicity or socioeconomic status.
On May 16, TLI launched a curriculum to educate health professions students, as well as other resources to educate medical providers about this disease. The comprehensive curriculum is comprised of:
- Four modules including an Overview of SLE, Health Disparities in SLE, SLE Through the Lifespan, and Morbidity and Mortality
- A video reference library
- Interactive and traditional case studies
The resources for medical providers include six continuing medical education/continuing education activities, videos on topics such as lupus-related clinical concerns and unconscious bias in health care, information about cultural competence and a 10-part video on living with lupus that practitioners can play in their office waiting rooms.
The objective of these educational resources is to assist providers, educators and students in the diagnosis, treatment and management of lupus. The resources are available at: http://thelupusinitiative.org/educators-students/resources/.
TLI also provides resources targeted for people living with lupus. These resources include general information, fact sheets, frequently asked questions, a symptom tracker and a mobile app. The mobile app, called Lupus Companion, will help patients with lupus keep track of their symptoms and medications and share this information with health care providers as needed.
To access information about the Lupus Initiative, visit www.thelupusinitiative.org/, use the resources for practitioners and spread the word about the curriculum to ensure the best care for people living with this often unrecognized and potentially devastating disease.
Jamila Rashid, PhD, MPH, is Associate Director for Research and Policy, Office of Minority Health, U.S. Department of Health and Human Services. Frances E. Ashe-Goins, RN, MPH, is Associate Director for Partnerships and Programs, Office on Women's Health, U.S. Department of Health and Human Services. The HHS Office on Women's Health provides national leadership and coordination to improve the health of women and girls through policy, education and model programs. The Office of Minority Health provides national leadership and support for health policies and programs designed to improve the health of racial and ethnic minorities and eliminate health disparities.