Living Well With Lupus: A Toolkit for Women


Published 11/7/22

Lupus is a chronic autoimmune disease where the body attacks its own tissues, creating widespread inflammation and symptoms throughout the body, which often results in organ tissue damage commonly in the joints, skin, brain, heart, lungs, kidneys, and blood vessels.

Lupus can take several forms, including systemic lupus erythematosus (SLE) (the most common form), cutaneous lupus erythematosus, drug-induced lupus, and neonatal lupus. The disease disproportionately affects women: 90% of Americans with Lupus are women ages 15-44.

The Society for Women’s Health Research created “Living Well With Lupus: A Toolkit for Women” to support women and their families in the lupus diagnosis and care journey. The toolkit explores symptoms, options for treatment, insurance coverage support, and tips for maintaining wellness at school, at work, and elsewhere.

Download Toolkit

What’s in the Toolkit?

Understanding Lupus

Diagnosing and Treating Lupus

Managing Your Lupus Care

Wellness Tips for Living with Lupus

Lupus Care Journal

Learn more by checking out the guide GlossaryResources, and References sections.

This toolkit is part of SWHR’s Lupus Program, 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.

This document is intended to serve as an educational and informative resource and is not intended or implied to serve as a substitute for medical or professional advice. The Society for Women’s Health Research does not make medical, diagnosis, or treatment recommendations, nor does it endorse or promote specific screening or diagnostic tests. Patients and consumers should confirm information and consult a professional health care provider to determine individual needs. The Society will not be liable for any direct, indirect, or other damages arising therefrom.  

This material was created by the Society for Women’s Health Research (SWHR) and is intended to serve as a public educational and informative resource. This material may be cited or shared on external channels, websites, and blogs, with attribution given to SWHR, or printed and displayed in its original formatted version. SWHR encourages the sharing and reposting of its content in order to spread awareness around women’s health issues. For specific questions about sharing SWHR content, please reach out to


SWHR’s Lupus Program is supported by educational sponsorships by Aurinia Pharmaceuticals and Eli Lilly & Company. SWHR maintains editorial control and independence over educational content.