Lupus Awareness Month Marked by Local, Online and Worldwide Activities

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by Mary Chapman |

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Despite the COVID-19 outbreak, ample online ways exist to mark Lupus Awareness Month, observed each May to call attention to lupus and raise funds for research and education.

The national effort is coordinated by the Lupus Foundation of America (LFA), which estimates that 1.5 million U.S. residents and at least 5 million people globally have a form of this autoimmune inflammatory disease. World Lupus Day, organized by the World Lupus Federation (WLF), is May 10.

“We know people with lupus are being heavily impacted by COVID-19, but that’s why we think it’s more important than ever that we come together and rally our communities [to] raise awareness and funds to support all those affected,” the LFA states in its announcement.

The LFA is providing a toolkit to help raise funds and awareness. Among the tools is a “pledge form” that commits supporters to helping make lupus more visible. There is also Lupus Bingo, which supporters can use and share to keep track of May activities; a Facebook profile photo frame; sample social media posts; shareable educational resources, such as lupus infographics and various disease facts; and shareable social media images.

Other LFA suggestions include hosting virtual fundraisers like a game night or “purple happy hour,” starting a Facebook fundraiser, and getting companies involved in raising awareness.

May 15 is Put on Purple day, and supporters are asked to don purple — the official color for lupus — to raise awareness and encourage donations. There are also sample social media posts and shareable images including a flyer. The toolkit also includes sample social media posts and images for corporate supporters.

Elsewhere, the Lupus Research Alliance is marking the month by sharing patient narratives over the next few weeks that encourage and motivate. Visit LupusResearch.org, Facebook, and Twitter for accounts of trials and triumphs, scientific discoveries, and advocacy successes.

For its part, SAGE Publishing is providing a related infographic and free articles about lupus from the SAGE Journals’ portfolio.

An advocacy organization called the Black Woman’s Agenda is highlighting an LFA survey conducted last year that shows the need for better public understanding of lupus, and why early diagnosis is crucial. Minority women tend to develop lupus at younger ages, experience more serious complications, and have higher mortality rates.

May 10 will mark the 17th annual observance of World Lupus Day. This day is sponsored by WLF, an international association of about 250 lupus groups in 75 countries aimed at increasing awareness and support for research, education, and lupus patient resources. An awareness toolkit includes downloadable images, sample posts, and lupus facts for social media sharing. There are also logos, a lupus symptoms checklist, a sample government proclamation letter, and a sample letter to send to media.

WLF recently conducted a global survey on how lupus affects physical function and quality of life, and got responses from more than 4,000 respondents from some 70 countries. Among the findings were that lupus affects mobility and the ability to conduct normal activities, including climbing stairs and doing chores.

“A global health problem, lupus affects people of all nationalities, races, ethnicity, gender, and age,” the WLF states on a webpage announcing results. “Lupus can affect any part of the body in any way at any time, often with unpredictable and life-changing results. While lupus knows no boundaries, knowing all you can about lupus can help control its impact.”

 

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