Lupus, hard to diagnose, disproportionately strikes black women
ATLANTA — Kim Schofield is passionate about educating college students about lupus, a debilitating disease that disproportionately affects young women, particularly African-Americans.
Such an event was held earlier this year on the campus of Clark Atlanta University, shortly after the deaths of two young women who had the disease. Now, the goal of Schofield, who participated in the event, is to make sure the campaign continues by holding similar events on other college campuses and in the community.
“Greater understanding reduces the level of fear,” said Schofield, 50, of Atlanta, who was diagnosed with lupus in 2000. “We’re really trying to flesh things out and give people the tools and resources to ask the right questions.”
The event was one of nine statewide symposiums presented by the Georgia Chapter of the Lupus Foundation of America. This event, targeting young women who need to know the signs and symptoms of lupus, has led to requests for more programs on other college campuses. The campuses are key targets simply because of the disease’s demographics.
Lupus is a chronic, autoimmune disease that affects an estimated 1.5 million U.S. residents. The disease, which has no cure, mostly strikes women of childbearing age, roughly 15-44, and can affect any part of the body: skin, organs, blood and joints. Black women are two to three times more likely to develop lupus although males and females of all ages can develop it as well.
Fifteen percent of all new cases are people younger than 18, said Maria Myler, president and CEO of the Lupus Foundation of America, Georgia Chapter. She said most patients live well with lupus, and the survival rates are far higher than they were one or two decades ago.
“These are relatively young people in their 20s and 30s who are just hitting the prime of their lives when they get this devastating disease,” said Dr. Sam Lim, associate professor of medicine at Emory University School of Medicine and chief of service for rheumatology at Grady Memorial Hospital.
“I didn’t look sick,” said Schofield, who works in lupus research in the division of rheumatology at Emory University’s School of Medicine. “I was thin, young and healthy.”
Schofield noticed she was always tired and was sensitive to sunlight. She was stunned when she found out she might have lupus. “I had never heard that word in my life,” said Schofield. “I went to my car and prayed and got a sense of overwhelming peace.”
Schofield said she knew that she wanted to advocate for others with lupus.
But she still felt isolated. “No one understood the disease,” she said. “I didn’t believe I was the only one, but I didn’t know where to find others.”
With lupus, the immune system shifts into overdrive, attacking healthy tissue as well as invading viruses, bacteria and germs. And it’s not easy to diagnose.
Symptoms, such as fatigue and joint pain, can mimic other conditions. Conditions range from mild to life-threatening, but most people with treatment can lead normal lives, according to the Washington, D.C.-based Lupus Foundation of America.
The cause of lupus is unclear, although many suspect genes might play a role and that there might be environmental or hormonal triggers.
“It’s not cancer, but lupus is dangerous, too,” said Vanessa Loiseau, whose 19-year-old sister, Ashmith, died in May one week after being diagnosed with lupus. “It can sneak up on you, and you don’t even know you have it.”