"We know that the genetic components of lupus are pretty complicated, and there is not much that we can do about them right now," Reeves says. "The environmental components, however, are something that we might be able to change."
It is not clear how many Americans have lupus. Estimates ranged from 240,000 to 4 million, but the Lupus Foundation of America puts the figure at 1.4 million. Women are nine times more likely to develop lupus than men. Autoimmune disease expert Charles Helmick, MD, of the CDC says a national registry is needed to get a better handle on just who has lupus and whether more people are getting it than in the past.
In a study published last May, Helmick and colleagues reported that women are five times more likely to die of lupus than men, and that the number of African American women who die from the disease has increased by 70% over the last two decades.
But Helmick tells WebMD that it is unclear whether more women are actually dying or whether the increase is due to better diagnosis.
"We need to develop a better understanding about just how many people have lupus so that we will know what these figures mean," he says. "A population registry would help us figure out what is going on throughout the United States."