This May for Lupus Awareness Month, the Lupus Foundation of America (LFA) continues the charge to Make Lupus Visible, encouraging others to raise awareness for this 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 – through sharing social media messages, sharing educational materials and promoting lupus awareness in your community. Find shareable Lupus Awareness Month tools and ways to get involved at lupus.org/LupusAwarenessMonth.
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. 
In addition to proper medical care, research has shown that development of self-management skills can reduce symptoms and improve quality of life for people with lupus (PWL). Health care professionals (HCPs) can support patients in building new skills and healthy habits to manage their disease by referring their patients to the LFA’s self-management resources. The LFA has developed the Self-Management Referral Toolkit for HCPs to refer their patients to free self-management resources and programs.
Including both digital and paper tools, the toolkit is designed to fit the unique clinical workflows and serve the needs of that patient population. The toolkit was developed for HCPs who see patients with lupus in primary care, rheumatology, or other clinical settings. The toolkit’s paper tools include a business card and promotional poster; both available in English and Spanish. A pre-drafted EHR smartphrase serves to refer patients to SELF in the after-visit summary or other EHR-generated materials that goes home with the patient.
For English-speaking PWL, the toolkit highlights the LFA’s free self-management mobile app, Strategies to Embrace Living with Lupus Fearlessly (SELF). For Spanish-speaking PWL, the toolkit promotes the LFA’s 12-week email series, Tome Control. Additional tools for HCPs to offer their patients are featured with the toolkit on the HCP resource page lupus.org/health-care-professionals, including paper self-management guides and links to the LFA’s Health Education Specialists and lupus support groups.
As a trusted resource on lupus, the LFA offers health care professionals and their patients free and accessible information, programs, and services.
Launched online in 2022 and expanded to a mobile app in 2023, SELF offers tailored self-management education, trackers, and other tools. Self-management education includes daily skill-building activities that are customized to the user’s readiness to make changes in their behavior. Users can track their symptoms and medications and keep a journal of their experiences. When HCPs refer their patients to SELF, they prioritize healthy behaviors at home and facilitate the opportunity for collaborative work to improve those behaviors. Because SELF is currently not available in Spanish, the Spanish language referral tools promote Tome Control, a weekly email series on lupus self-management for Spanish literate PWL.
This year the LFA has also developed two paper educational guides to support PWL in building self-management skills for the most popular areas of lupus self-management: managing symptoms and managing stress. The Self-Management Guides are booklets derived from content in the SELF mobile app. They are designed for individuals with low health literacy and/or limited access to technology. They can be offered by HCPs as an alternative to the SELF mobile app.
The Self-Management Referral Toolkit and the Self-Management Guides are available to order on the HCP resource page at lupus.org/health-care-professionals.
For over 40 years, the LFA has played a leading role in the fight against lupus with a dedicated mission to improve 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 continue to be patient-centered and evidence-based to address urgent and unmet needs of the lupus community.
Funded through Centers for Disease Control and Prevention (CDC) Cooperative Agreement #NU58DP006907 in partnership with the Lupus Foundation of America. The content is solely the responsibility of the authors and does not necessarily represent the official views of the CDC.