Course 7 – Lupus

Lupus is a complex chronic autoimmune disease that can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and nervous system. For many people, the journey to diagnosis can be long and frustrating. Symptoms often come and go, vary from person to person, and may be difficult for others to see or understand.

Living with lupus involves much more than managing physical symptoms. Fatigue, pain, brain fog, sleep disturbances, anxiety, depression, employment challenges, concerns about pregnancy and family planning, and difficulties accessing care can all affect quality of life. Because lupus is unpredictable, many people report feeling uncertain about what symptoms mean, when to seek care, how treatments work, and what they can do to manage the disease effectively.

In Arthritis Consumer Experts’ (ACE) National Survey on Lupus in Canada, people living with lupus described the substantial physical, emotional, social, and economic impact of the disease.¹ People reported challenges obtaining a diagnosis, accessing specialists, managing fatigue and flares, maintaining employment, navigating pregnancy and family planning decisions, and accessing mental health support and medication reimbursement. The survey also highlighted the need for reliable information, practical self-management strategies, and opportunities to learn from trusted experts and patient organizations.

Based on these findings and current fact-based research, clinical practice guidelines, and expert review, ACE developed JointHealth™ Education – Lupus. This six-lesson course aims to help people living with lupus better understand their disease, participate actively in healthcare decisions, and develop practical skills for managing everyday challenges.