Emotional Support and Clinical Trial Volunteers Are the Focus for World Lupus Day 2019

The 16th annual observance of World Lupus Day on May 10 will highlight how emotional support helps people with lupus cope with its health effects and on the need for lupus clinical trial volunteers. World Lupus Day is sponsored by the World Lupus Federation, a global coalition of 200+ lupus patient groups, that seeks to raise awareness of lupus and advocate for more significant funding for lupus research, education and support services for the millions of people worldwide living with the life-threatening, chronic autoimmune disease. 

Lupus often causes severe pain and overwhelming fatigue that interferes with activities of daily living. Isolation and depression resulting from lupus can be devastating. The emotional impact of lupus can be as disabling as the physical symptoms. People with lupus can benefit from emotional support and understanding from friends and family members who often fail to appreciate the serious health effects of lupus. 

Only one therapy explicitly developed for lupus has received regulatory approval in nearly 60 years. With 40+ potential therapies now in development, the need for volunteers with lupus to enroll in a clinical trial is critical if there is to be an arsenal of treatments. Lupus can affect any organ system, and one therapy is not adequate to treat the disease, which can have multiple symptoms varying from person to person.

Because of the many ways lupus can affect the body, people with the disease need access to quality care from several medical specialists and can benefit from treatment delivered at multidisciplinary care lupus clinics. Health effects of lupus can include strokes, seizures, heart attacks, kidney failure and even death.

Lupus is a disease where the immune system, for unknown reasons, targets the body’s own healthy tissue, such as the skin, joints, and organs, most often the kidneys, heart, lungs, brain, blood and blood vessels. The exact cause is not fully understood, but doctors believe a combination of genetics, hormonal and environmental factors are involved. Lupus is not contagious, and presently there is no cure.

As part of the observance on May 10, the World Lupus Federation is partnering with GSK to promote the release of a new report, "A Vision for Lupus,” which highlights inequalities in care and areas for action to address gaps in services. World Lupus Federation members served on the global multidisciplinary steering committee that collaborated with GSK to develop the report. 

For more information about lupus and World Lupus Day, please visit worldlupusday.org.