When a team from the Division of Rheumatology of the Emory University School of Medicine partnered with the Georgia Department of Human Resources, Division of Public Health to start the Georgia Lupus Registry in May 2004, they knew systemic lupus erythematosus (lupus) was a complicated and widespread disease. With enrollment beginning last October and over 700 lupus patients registered from seven sites, they now understand the scope of this debilitating disease.
The Centers for Disease Control and Prevention (CDC) received funding from the federal government to use over several years to fund two state lupus registries in Georgia and Michigan. Both state registries aim to count lupus patients living in multiple selected counties between 2002 and 2004. Chose for their demographic makeup, the Georgia Lupus Registry will review cases in Fulton, DeKalb and Richmond counties.
It was 20 years ago when Barbara McGee first discovered what appeared to be a large rash on her neck and chest. She was only in her early 30s, and felt tired, sick and fatigued. Upon visiting her doctor, she was diagnosed with connective tissue disease, an autoimmune process involving various tissues throughout the body.
At that time, Ms. McGee and her physician were unaware that her connective skin tissue disorder and fatigue were actually better described as a disease called systemic lupus erythematosus (lupus), an autoimmune disease with no known cause or cure. The disease can present a vast array of possible symptoms including skin rashes, sensitivity to sunlight, heart and kidney damage, arthritis, neurological problems, and blood disorders. Lupus disproportionately affects African-Americans, Hispanics, and women in their childbearing years.
"I was under a lot of stress," explains Ms. McGee, who was eventually diagnosed with lupus in 1998. She now receives medical treatment for lupus at Grady Memorial Hospital. Her physician, Sam Lim, MD, assistant professor medicine in the Division of Rheumatology at the Emory University School of Medicine, started a multi-disciplinary lupus clinic at Grady in 2003.
"When I was diagnosed, I had three young children, I was working full-time as an accountant, and I was going to school full-time," she says. "Now I know that stress activates lupus. Unfortunately, not enough doctors understand the symptoms of lupus."
Ernesto Rodriguez, another patient at Grady Hospital, also has lupus. He is 23 years old and has suffered with the disease since he was 21.
"I started feeling pain in my joints and legs, and I was tired all the time," says Mr. Rodriguez. "Then I started breaking out with rashes on my face and hands. The doctors took a biopsy and told me it was lupus. I didn't even know what lupus was. I thought it was like poison ivy, and it would go away." "Since then, my life has changed. I used to go outside and play soccer in the sun, but I stopped doing that because the sun makes the disease flare up," says Mr. Rodriguez.
Working as an arm of the Division of Public Health, Dr. Lim and other researchers at Grady continue to identify more patients like Mr. Rodriguez and Ms. McGee to include in the Georgia Lupus Registry. The registry seeks to determine how widespread lupus is and how quickly it is developing in the population. People with lupus living in Fulton, DeKalb, and Richmond counties may be eligible and are encouraged to self-refer to the Georgia Lupus Registry by calling (404) 616-0433. Individuals are also able to complete lupus Registry surveys and self-refer online through the Lupus Foundation of America¬Georgia Chapter web site at: http://www.lfaga.org