Lupus, hard to diagnose, disproportionately strikes black women

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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, a 50-year-old Atlanta resident, 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, including about 55,000 in Georgia. The disease, which has no cure, mostly strikes women of childbearing age, roughly 15 through 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 under the age of 18, said Maria Myler, president and CEO of the Lupus Foundation of America, Georgia Chapter, which presented the symposium along with CAU and neighboring historically black colleges and universities. 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. “They’re starting families and careers. These are the faces of the disease.”

Stunned by diagnosis

Schofield had everything working in her favor before she was diagnosed with lupus. She was a leader in the community and in her church.

“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.”

She had a stable job, had moved into a new house a couple of years earlier and was a single parent of a young daughter, but she 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, who will be honored for her advocacy work during the Night of Hope Gala on Nov. 10 to raise funds for the Georgia Chapter and research. “I have to be honest, I went to my car and prayed and got a sense of overwhelming peace.” Schofield said she knew then 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 can sneak up on you’

Simone Watson, an accounting major at CAU, was diagnosed with lupus when she was 16, said her mother, Cassandra Watson of Chicago. She complained that her feet were swollen and hurt. Her physician advised them to see a rheumatologist, who diagnosed her with lupus. “As a young person, you don’t want to believe that you’re ill,” said her mother, “but it didn’t stop her from pursuing her dreams and goals. She pushed forward.”

She was leading a pretty good college life, but she was still occasionally plagued by flare-ups. In May, she called her mother and sister in tears because of intense pain.

“There was a lot of water retention in her feet and legs,” her mother said. “She said she was tired all the time, and it was difficult to walk. She said it’s like she was carrying a house.”

She went to the hospital emergency room and was admitted, then released. But soon she was back. Her mother said it seemed like everything was getting back on track when she took a turn for the worse and died.

“It’s not cancer, but lupus is dangerous, too,” said Vanessa Loiseau, whose 19-year-old sister, Ashmith, another CAU student who died in May after being diagnosed with lupus a week earlier. “It can sneak up on you, and you don’t even know you have it.”

Myler said for many people, it can take between three and four years and between three and four doctor’s visits before they are properly diagnosed.

But she said research on lupus looks promising.

“We have far more new drugs in the pharmaceutical pipeline than ever before,” she said. “The next five years will be incredibly different for people with lupus.”