WASHINGTON, D.C. (WDVM) — May marks Lupus Awareness Month, a time to join together as a community to raise awareness about the autoimmune disease that approximately 1.5 million Americans have.
The Lupus Foundation of America calls the autoimmune disease a cruel mystery; that’s why their mission especially during May is to increase knowledge and visibility about lupus to get one step closer to finding a cure.
Lupus is a chronic autoimmune disease where your immune system is overactive and attacks your own body, but with an early diagnosis and immunosuppressant drugs, patients can live a healthy life.
While lupus knows no racial or ethnic boundaries, the Lupus Foundation of America said that women develop the disease more often than men, and lupus is 3 times more common in Black women than in white women.
Sydney Evans was diagnosed with lupus in 2017 after being sick for several years.
“A lot of people who look like me and my community in the Black community, they don’t know that much about lupus, and there’s been a stigma around it that you know, oh, that’s a bad thing,” said Evans.
Diagnosing lupus can also be challenging because there is no single test that can give doctors a yes or no answer. This was the reality for lupus warrior Cherri Perron, who has been experiencing lupus symptoms since 1987. It took six years and five different doctors for her to get accurately diagnosed.
“To have a physician, someone in the community that’s trusted, tell you that you’re making it up, it’s all in your head, go home, you’ll be fine,” Perron said. “It was an awful, awful experience.”
People with lupus often experience “flare-ups,” meaning that their symptoms such as joint pain and fatigue worsen. Evans says the pandemic has also presented unique struggles for people living with lupus because of their compromised immune systems.
“I take Hydroxychloroquine so during the pandemic, there was that shortage and, you know, difficult to find medication,” said Evans. “So obviously, that was a huge deal. I felt myself rationing out my medication. No one wants to do that. I take it twice a day, every day. you know, I need this medication.”
Perron was diagnosed in 1987 and says back then there wasn’t a lot of information about this mysterious disease, but because of advocacy lupus research has made great strides. But she says there’s still work to be done so she will continue to share her story.
For more information about the Lupus Foundation of America, click here.