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Article written by
Mary K. Talbot
Maya Angelou once wrote, “We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.”
Lupus has transformed the lives of 1.5 million Americans diagnosed with this systemic autoimmune disease. Many lives are affected when one of us receives the lupus diagnosis. The purple butterfly, a symbol used to unify the lupus community, can be embraced by those of us with the disease — along with our family and friends.
There’s strength in numbers. If we work together with our family and friends to wear the purple ribbon and to show off our butterflies, we can bring attention to the disease and demonstrate its impact — both on the street and on social media — with the Butterfly Challenge.
Spread the word about the impact of lupus on our bodies, our pocketbooks, and our relationships. Together, we can create awareness, educate the public about the symptoms, push for more research, and create more empathy for those who are having a flare-up or are unable to work because of the progression of the disease.
About half of people who have been diagnosed with lupus at some point develop a malar rash that is raised and scaly, and extends from cheek to cheek over the bridge of the nose. It resembles the shape of a butterfly, which has become a popular symbol representing the disease.
Butterflies are also significant because they are a symbol of hope. Recent scientific discoveries are finding new answers to the complex disease called lupus.
In 2016, four researchers at Yale University made a discovery through their study of lupus that provides promise for some types of cancer. Lupus patients may show resistance to certain malignancies, such as breast cancer. The lupus butterfly theory proposes the hope that lupus antibodies may be harnessed to provide protection against certain malignancies in the future.
In February 2020, The Rheumatologist published an article indicating that researchers are closer to finding out who is most likely to develop lupus. There are potential clues to disease prevention in the discovery that people who are antinuclear antibody (ANA)-positive appear to suppress lupus disease activity.
Having lupus can sometimes be socially isolating. People are often reluctant to talk about their symptoms, medications, and doctors’ appointments with loved ones for fear of rejection, a lack of understanding, or feeling burdensome. One MyLupusTeam member said, “It’s a tough situation trying to find someone that understands what you’re going through.”
People are often scared when a loved one has a disease. They feel powerless to help, but information and education can help them understand what you are going through. Engage them with your doctor and treatment plan. With education, they can become powerful advocates for you and for finding new treatments for lupus.
If every one of us with a lupus diagnosis invites three friends or family members to join us in wearing purple and posting photos on social media, there will be 6 million Americans bringing awareness to the disease. Think of that purple power!
There is power in our numbers when we all take the Butterfly Challenge. We must become beautiful, winged warriors advocating for ourselves and for a cure for this disease. Working together, we hope to transform the health care landscape and get more funding for lupus research.
Here are a few conversations about lupus awareness on MyLupusTeam:
How do you raise awareness of lupus? Is your favorite lupus symbol a butterfly, a wolf, or a purple ribbon? Inspire others by commenting below or sharing your ideas on MyLupusTeam.