Lupus community aims to improve visibility this Awareness Month

LFA, Exagen partner on campaign for better diagnostic testing

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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A rare disease illustration shows one red-highlighted person in a large crowd of people.

The Lupus Foundation of America (LFA) is calling on the community to help increase visibility and promote education about the autoimmune disease throughout the month of May — thereby marking Lupus Awareness Month.

“All too often people with lupus hear that they don’t ‘look’ sick. This is why it’s so important to Make Lupus Visible during Lupus Awareness Month in May,” Mary T. Crimmings, the LFA’s interim CEO, said in a press release.

Throughout the month, the foundation will be sharing facts and stories on social media, using the hashtag #lupusawarenessmonth. Each week will have a different theme, such as common symptoms — with an emphasis on joint pain — available treatments, and navigating life with lupus.

The LFA is encouraging people throughout the lupus community to get involved in spreading awareness on social media. To help, the foundation has prepared an awareness toolkit, with resources like sample posts and infographics that can be easily shared.

Community members also can donate to the foundation, or host fundraisers through events or on Facebook.

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Efforts will be ongoing throughout the month, and on May 10 — World Lupus Day — the foundation is inviting the community to wear purple in honor of lupus awareness.

“By raising awareness and increasing understanding of lupus, we can help reduce the time to diagnosis and provide better support for those living with this cruel and mysterious disease,” Crimmings said, adding, “Together, we can make a difference and improve the lives of those affected by lupus.”

Spreading awareness is key and we are proud to work with our partners to cultivate that awareness.

Exagen, a company that markets a diagnostic test for lupus called AVISE, announced it’s partnering with the LFA on a campaign aimed at rheumatologists — doctors who specialize in autoimmune diseases like lupus. Together, the two will provide educational materials about lupus to these specialists.

The goal is to highlight the importance of identifying common signs of lupus to help ensure patients are diagnosed quickly and accurately. Because lupus symptoms can vary significantly from person to person, and many — like fatigue and pain — can’t be objectively measured, it’s common for patients to wait a long time before they’re correctly diagnosed.

“Receiving a diagnosis is a central part of the journey for patients dealing with autoimmune diseases,” John Aballi, president and CEO of Exagen, said in a company press release.

“Our mission is to shorten the time to diagnosis, empowering providers and their patients to change the trajectory of their health, especially for those dealing with lupus,” Aballi said.

Exagen also will be conducting its own efforts to increase awareness, including sharing educational resources and personal stories from people living with lupus.

“Spreading awareness is key and we are proud to work with our partners to cultivate that awareness,” Aballi said.

In its efforts to celebrate Lupus Awareness Month, the Lupus Research Alliance (LRA) is saluting the “ManyOne” who strive to make a difference. The LRA also is celebrating those who share their stories and help advance lupus research.

“Last year, the Lupus Research Alliance launched our ManyOne Can campaign during Lupus Awareness Month to offer opportunities to get involved in our efforts to transform lives of people with lupus,” Albert T. Roy, the LRA’s president and CEO, said in a press release.

“This Lupus Awareness Month, we celebrate the great successes that are already being achieved and exciting ventures coming up that involve the lupus community — the people who battle the disease shoulder to shoulder with those from industry, government, researchers, and academia who are committed to accelerating lupus advances. We will be bringing you their stories of accomplishments in advocacy, research, fundraising and education,” Roy said.

The alliance highlights many ways through which supporters may contribute to these efforts, including by participating in, advocating for, and helping fund research to advance the development of treatments and, potentially, a cure for lupus.

Supporters and members of the lupus community who are interested may sign up on the LRA’s webpage to become part of the ManyOne Can initiative.