World Lupus Day this year will focus on the need for clinical trial volunteers and how emotional support helps patients deal with the chronic autoimmune disorder.
May 10 will mark the 16th annual observance of World Lupus Day, sponsored by the World Lupus Federation, an international group of more than 200 patient organizations aimed at increasing awareness and support for research, education, and lupus patient resources.
As part of the global call to action, the federation is collaborating with pharmaceutical company GSK to advertise the May 10 release of “A Vision for Lupus,” a report that highlights disparities in patient care throughout the world. Federation members served on the multidisciplinary steering committee that worked with GSK to produce the report.
The disease frequently results in intense pain and severe fatigue that can hamper daily activities. What’s more, resulting isolation and depression can be as debilitating as the disease’s physical challenges.
”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,” said a World Lupus Day announcement by the Lupus Foundation of America, a nonprofit organization that works to advance lupus research and to improve patients’ lives.
Lupus affects individuals in different ways. Symptoms come and go during periods called flares, when patients may experience headaches, fatigue, sensitivity to light, joint pain, facial rashes, and an array of other problems. Some 5 million people globally are affected by the disease; 16,000 new cases are reported annually.
While what causes lupus is not completely known, scientists widely point to a combination of genetics, hormones, and the environment.
The foundation said that with more than 40 promising treatments in the pipeline, there is a significant need for increased enrollment in clinical trials. Due to the myriad ways the disease manifests, patients require access to care from a host of specialists from multidisciplinary care centers. Lupus can also result in seizures, stroke, kidney failure, and heart attack.
“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,” the announcement states.
To observe the day, supporters are asked to share messages on social media using hashtags #WorldLupusDay and #LupusAwareness, and to use a toolkit including flyers, a signs and symptoms checklist, logos, and media tools.
In addition, the federation has conducted a global survey of lupus patients; results will be released May 10. Advocates are also asked to read the “Lupus Knows No Boundaries e-Report,” which chronicles patient experiences, including ongoing physical and emotional needs.
Visit this site for further information about World Lupus Day.
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