By Monica Lefton, SWHR Communications Manager.
The body’s immune system is a powerful, complex tool designed to keep individuals healthy by recognizing foreign material (such as pollen, bacteria, or a virus) that enters it, attacking it, and removing it from the body. Sometimes the immune system mistakenly cannot tell the difference between the foreign material and one’s own cells, causing the body to wrongly attack itself. This process can lead to the development of an immune-mediated inflammatory disease (IMID).
IMIDs and autoimmune diseases (a subset of IMID) are generally more commonly diagnosed in women. Examples of such conditions include alopecia areata, lupus, multiple sclerosis, psoriatic arthritis, and thyroid diseases, among others.
Lupus, an autoimmune disease that often causes inflammation and organ tissue damage across the body, affects 90 percent of U.S. women ages 15-44. It is still not clear why or how the disease develops, but sex, age, race, and family history can all play a role.
Every step of the lupus care journey, from diagnosis to disease management and health insurance navigation, can be complex because of how diversely the disease can appear in individuals over their lifetimes. The Society for Women’s Health Research developed the Living Well with Lupus: A Toolkit for Women to educate women and those within their support systems about living with lupus. The toolkit includes information about lupus risk factors, identifying and tracking symptoms, wellness tips, and guides for speaking with a health care provider about disease management. Sections include:
- Understanding Lupus
- Diagnosing and Treating Lupus
- Managing Your Lupus Care
- Wellness Tips for Living with Lupus
- Resources for Women Living with Lupus
- Lupus Care Journal
Download The Living Well With Lupus Toolkit
This toolkit builds on the work done as part of SWHR’s Lupus Program, which was launched in 2022 to address the impact of lupus on women’s health across the lifespan. The program engages researchers, health care providers, patients, advocates, and health care policy decision-makers to explore strategies to address knowledge gaps, unmet patient needs, and relevant policies that present barriers to equitable and quality care for women living with lupus. Read takeaways from the program’s Working Group captured earlier in 2022 here: Education and Access Play Key Role for Improving Well-being for Women Living with Autoimmune Diseases.
The SWHR Lupus Program also hosted a Closing the Loop for Lupus event series, during which several experts and women with lupus shared their personal stories and expertise to empower women living with lupus. Among many blogs written on the topic was one featuring an interview with Juana Mata, lupus patient and co-founder of Looms for Lupus. Check out the toolkit’s resource section for a list of support organizations like Looms for Lupus that can help individuals connect with and learn from other women living with lupus. Consider sharing your own lupus story with SWHR by visiting swhr.org/shareyourstory.
SWHR’s Lupus Program is supported by educational sponsorships from Aurinia Pharmaceuticals and Eli Lilly & Company. SWHR maintains editorial control and independence over educational content.