Join NACDD and Lupus Foundation of America to "Make Lupus Visible"
May is Lupus Awareness Month and May 10th is World Lupus Day, a time when the Lupus Foundation of America (LFA) works to raise funds and awareness of the often invisible impact of lupus. There are many ways you can work alongside LFA to Make Lupus Visible in May – from spreading the word on social media to sharing educational materials and promoting awareness of LFA programs and services. Find out how you can take action at Lupus.org/LupusAwarenessMonth, and check out the Lupus Awareness Month toolkit with graphics to share on social media and sample posts.
Lupus is a complex, chronic autoimmune disease impacting an estimated 1.5 million Americans. Anyone can develop lupus, but lupus disproportionately impacts women ages 15 to 44 and racial or ethnic minority groups — including people who are Black/African American, Asian American, Hispanic/Latino, Native American, or Pacific Islander.
Because lupus impacts many parts of the body, it can cause a broad array of symptoms. Common symptoms include, but are not limited to, extreme fatigue, joint and muscle pain, rashes, photosensitivity, and organ damage. While lupus can be debilitating and even fatal, the disease can be managed in most cases through aggressive medical treatment and lifestyle changes.
The LFA has been leading the fight to end lupus for over 40 years. Aiming to improve the quality of life for all people affected by lupus, LFA programs stand upon three pillars — research, care and support for people affected by lupus, and advocacy. Doctors, scientists, health educators, and people with lupus work together to create LFA’s resources and programs. This means they are evidence-based and patient-centered. The following resources are a selection of LFA’s offerings that may be of interest to the NACDD community:
The National Resource Center on Lupus (NRCL) is a living collection of up-to-date resources and information on lupus. The NRCL includes over 600 resources for people with lupus, caregivers, parents, and professionals. Resources include articles, slideshows, infographics, downloadable factsheets, videos, and podcasts with 44% of resources offered in Spanish. The NRCL website receives more than 11 million pageviews per year.
- Visit the NRCL at Lupus.org/resources.
LFA Health Education Specialists are specially trained to provide people with lupus, their families, and caregivers with non-medical support, disease education, and helpful resources. Health Education Specialists can help find trustworthy information to answer questions about lupus and how to cope with it. Health Education Specialists provide up-to-date information about lupus, connect individuals with resources found on the NRCL and beyond, direct people with lupus on how to find providers that meet their needs, and much more. Bilingual (Spanish/English and English/Arabic) Health Education Specialists are available to answer questions. LFA Health Education Specialists answer 2,500 to 3,000 inquiries each year.
- The LFA Health Education Specialists can be reached by using an online form available at Lupus.org/HealthEducator or leaving a message at 1-800-558-0121, ext. 136
SELF is a free, online self-management program designed to help people with lupus live their best life. Launched in January 2022, this CDC-funded program is evidence-based and tailored to the user’s readiness to change their behavior. Users choose to focus on one of the four pillars of lupus self-management education:
- managing stress,
- managing symptoms,
- managing medications and
- working with your healthcare team.
The SELF program also offers symptom and medication trackers, a personal journal, and links to LFA resources like the NRCL, Health Education Specialists, and local support groups. Over 2000 people with lupus have enrolled in SELF since its launch.
- More information and the link to register can be found at Lupus.org/SELF.
The LFA will share a more in-depth look at their programs on the General Member Webinar on July 13, 2023. In the meantime, all LFA programs and resources are available at Lupus.org and more information on Lupus Awareness Month can be found at Lupus.org/LupusAwarenessMonth.
Funding Acknowledgement Statement: 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. From 2020 to 2023, funds totaling $4,413,223 have been used to support activities under the PULSE Project.