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."
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 through 44, and can affect any part of the body. 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. "They're starting families and careers. These are the faces of the disease."
Schofield had everything working in her favor before she was diagnosed. 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. "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 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.
Simone Watson, an accounting major at Clark Atlanta University, was diagnosed with lupus when she was 16, said her mother, Cassandra Watson. She complained that her feet were swollen and hurt. A rheumatologist diagnosed her with lupus.
She was leading a pretty good college life, but she was still occasionally plagued by flareups. 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. 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, 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."