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An estimated 1.5 million Americans are living with lupus, but awareness of the disease and its symptoms is limited.

“Lupus is an autoimmune disease, which means that the body’s immune system, which typically fights infection and cancer, has turned somewhat against itself,” Gary Gilkeson, a professor of medicine at MUSC in Charleston, said. “It is a combination of genetic and environmental factors.”

Gilkeson conducts research that focuses on the causes and treatment of lupus.

To be diagnosed with lupus, Gilkeson said patients must meet four of 11 criteria, which include skin rashes, mouth ulcers, arthritis and cardiac, brain and/or kidney involvement, among other symptoms.

“It’s primarily women, primarily in the childbearing years,” he said.

According to the Lupus Foundation of America, 90 percent of the people living with the disease are women. It usually develops between the ages of 15 – 44.

Patients may see their doctor sooner if they develop severe skin rashes or arthritis, but sometimes the symptoms are mild.

“They just attribute it to a little infection and they will wait a while to be seen,” Gilkeson said. “Lupus isn’t seen a lot by primary care physicians, so they may miss it.”

The severity of the disease is wide ranging. Some patients have very manageable symptoms.

“They present with rash and arthritis and that’s all they get,” Gilkeson said. “Others will later get cardiac disease or kidney involvement. It can remain the same or it can progress. The prognosis for patients has improved significantly over the last 30 years. Back in the 1950s, the 5-year survival was only about 20 or 30 percent. In the 1990s and 2000s, the 10-year survival is over 90 percent. We still want those other 10 percent to not succumb. It’s still a significant disease.”

The condition is treated with medication. Gilkeson is in involved with National Institutes of Health clinical trials aimed at solving the puzzle of lupus.

“We are very much looking at the environmental causes of lupus,” he said. “Depending on your genetic background, a type of exposure may trigger lupus in you but not in someone else.”

Gilkeson said close to 100 genes are predisposed to lupus.

“We have a lot of research ongoing in treating and trying to find the cause,” he said.

What you need to know about lupus

On average, it takes nearly six years for people with lupus to be diagnosed, from the time they first notice their lupus symptoms. Lupus is two to three times more prevalent among women of color —  African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders — than among Caucasian women. Source: Lupus Foundation of America, lupus.org.

The symptoms

According to the Mayo Clinic, the symptoms of lupus depend on what part of your body is impacted by the disease. Common symptoms include:

  • Fatigue and fever
  • Joint pain, stiffness and swelling
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
  • Skin lesions that appear or worsen with sun exposure (photosensitivity)
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches, confusion and memory loss
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