WASHINGTON (WDVM) — May marks Lupus Awareness Month, a time to come together as a community to raise awareness about the autoimmune disease from which an estimated 1.5 million Americans suffer.
The Lupus Foundation of America calls the autoimmune disease a cruel mystery; that’s why their mission, especially in May, is to increase knowledge and visibility about lupus in order to get closer to finding a cure.
Lupus is a chronic autoimmune disease in which your immune system is overactive and attacks your own body, but with early diagnosis and immunosuppressive drugs, patients can lead healthy lives.
While lupus knows no racial or ethnic boundaries, the Lupus Foundation of America has stated that women develop the disease more often than men and that 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 are like me and my community in the black community, they don’t know 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 difficult because there is no single test that can give doctors a yes or no answer. That was the reality for lupus warrior Cherri Perron, who had had symptoms of lupus since 1987. It took her 6 years and 5 different doctors to get an accurate diagnosis.
“Having a doctor, someone in the community who is trusted, telling you that 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 have ‘flare-ups’, which means their symptoms such as joint pain and fatigue get worse. Evans says the pandemic has also presented unique struggles for people living with lupus due to their weakened immune systems.
“I take hydroxychloroquine so during the pandemic there was this shortage and, you know, hard to find drugs,” Evans said. “So obviously that was a big deal. I felt like I was rationing my meds. Nobody wants to do that. I take it twice a day, every day. You know, I need that med.
Perron was diagnosed in 1987 and says that at the time there was not much information about this mysterious disease, but thanks to advocacy, lupus 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.