This May for Lupus Awareness Month, the Lupus Foundation of America (LFA) will continue its effort to Make Lupus Visible, encouraging everyone to raise awareness for the often invisible and devastating disease while also raising funds to support lupus research, education programs and support services. There are many ways you can make an impact for Lupus Awareness Month and help make lupus visible – whether it’s sharing social media messages, sharing educational materials or promoting lupus awareness in your community. Find shareable Lupus Awareness Month tools and ways to get involved at lupus.org/LupusAwarenessMonth.
The LFA has been leading the fight against lupus for over 40 years and is dedicated to improving the quality of life for all people affected by lupus through programs of research, education, support and advocacy. Our efforts have stimulated advances in lupus research that are providing insight into the underlying causes of lupus and its progression while creating unprecedented opportunities to expand our understanding of lupus. LFA programs are patient-centered and evidence-based to address urgent and unmet needs of the lupus community.
Lupus is a complex, chronic autoimmune disease that can cause inflammation and pain in any part of the body. Anyone can develop lupus, but lupus disproportionately impacts women ages 15 to 44 and people who are Black/African American, Asian American, Hispanic/Latino, Native American, or Pacific Islander. Learn more about lupus at lupus.org/resources/what-is-lupus.
Members of racial and ethnic minoritized populations and underserved communities generally experience poorer overall health outcomes, lower levels of access to quality healthcare, and lower life expectancy as compared to Whites. These communities are also burdened disproportionately by chronic diseases like lupus. Additionally, the higher burden of disease and lack of preventive care and disease management support among racial and ethnic minoritized populations contributes to higher healthcare costs.
Over half of Americans (63%) have never heard of or know little or nothing about lupus, underscoring the urgent need to raise awareness of the disease’s brutal impact on every part of a person’s life. Because many symptoms and effects of lupus are invisible, it can often leave those living with lupus feeling misunderstood and isolated.
Understanding that there is a need to increase awareness and access to resources in underserved and under-resourced communities, the LFA recognizes the importance of involving Community Health Workers (CHWs). A community health worker (CHW) is a trained, locally based, culturally competent lay healthcare worker who is uniquely situated to serve as a bridge between communities, healthcare systems, public health, and social services. CHWs provide services that improve healthcare access and education to promote understanding of health problems like lupus.
A Community Health Worker Resource Hub was launched in early 2024 through LFA’s Partners United for Sustainable Lupus Education (PULSE) program and in partnership with AstraZeneca (AZ). PULSE is funded through a five-year cooperative agreement with the Centers for Disease Control and Prevention (CDC). The goal of PULSE is to increase awareness of the signs and symptoms of lupus, reduce the time to an accurate diagnosis, and improve the overall quality of life for people with lupus (PWL).
The CHW hub features on-demand learning modules to increase CHW’s knowledge about lupus including the signs and symptoms, treatments, resources and support available to PWL. The CHW Resource Hub includes downloadable resources that can be shared in your community. A certificate of completion is available upon the completion of the post-survey, each module is 0.5 professional development hours.
The LFA seeks to use the CHW Program as a model to expand its outreach and engagement with non-clinical professions that are critical to sustaining the health and well-being of PWL such as patient navigators and social workers. Together we can work towards the goal of reducing the time to diagnosis as well as improving the overall quality of life of those living with lupus. Visit the CHW Resource Hub at lupus.org/CHW.
The Partners United for Lupus Sustainable Education and Awareness (PULSE) Project is supported, in part, by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services under cooperative agreement #NU58DP006907. Funds received are used to support campaigns, initiatives and resources developed in support of the PULSE Project.