WASHINGTON (WDVM) – May marks Lupus Awareness Month, a time to come together as a community to raise awareness of 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 the month of 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 early diagnosis and immunosuppressive medications, patients can live a healthy life.
Although 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 a lot about lupus, and there’s a stigma around it that you know, oh, that’s a bad thing,” Evans said.
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 showing symptoms of lupus since 1987. It took 6 years and 5 different doctors for her to be accurately diagnosed.
“Having a doctor, someone you trust in the community, say you’re making it up, it’s all in your head, go home, you’ll be fine,” Perron said. “It was a horrible, horrible experience.”
People with lupus often experience “flare ups,” meaning their symptoms, such as joint pain and fatigue, get worse. 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, hard to find drugs,” Evans said. “So obviously that was a big deal. I felt myself rationing my medication. Nobody wants to do this. I take it twice a day, every day. you know, I need this medicine.”
Perron was diagnosed in 1987 and says at that time there wasn’t much information about this mysterious disease, but because of the lupus advocacy, research has made great strides. But she says there is still work to be done, so she will continue to share her story.
For more information about the Lupus Foundation of America, click here.