Singer Lady Gaga addressed her health this past summer, saying she doesn't have lupus, but she has been tested for it and there is some reason to be concerned. It was a contradictory response, but it befits the nature of this mystifying and misunderstood autoimmune disease.
There is no known cause or cure for lupus, a disease in which the immune system attacks the body's own tissues and organs. Though in most cases lupus is highly treatable, it can be fatal and diagnosis can be challenging. Meenakshi Jolly, MD, director of the Rush Lupus Clinic, sheds some light on this tricky disease that affects roughly 1.5 million Americans.
- Many variables determine a diagnosis. A variety of tests can detect some changes associated with lupus — such as abnormal red and white blood cell counts, or the presence of a high amount of damaging antibodies — but a diagnosis is made based on a combination of variables. A physician, usually a rheumatologist, will take into account your symptoms, medical history and examination, blood tests, and the medical history of your close family members. In Lady Gaga's case, she had an aunt who died of lupus. "A family history of any autoimmune disease, whether it's rheumatoid arthritis, multiple sclerosis or lupus, makes you more likely than others to have a positive screening for lupus," Jolly says. "A blood test alone, however, isn't enough to make a diagnosis. In some cases, there can be some symptoms that may also be seen in lupus or a positive blood test, but the patient still may not have lupus."
- Symptoms aren’t easy to pin down, either. The symptoms of lupus include periods of excessive tiredness, sore joints, hair loss and rashes. Most of the symptoms usually aren't enough to raise a red flag for doctors initially to consider a serious or long-term disease, particularly with younger patients. "Patients often see multiple doctors at first," Jolly says. "When they don't get better after some time, doctors may then start to think lupus may be the cause." A screening test for lupus is ordered at that stage by most doctors, and it is positive for more than 90 percent of patients who have the disease.
- Treatment has made strides. In March 2011, the Food and Drug Administration approved Benlysta, the first new treatment for lupus in 56 years. Physicians hope the drug will reduce flares of the disease. Before the use of medications – such as steroids, anti-inflammatory agents and sometimes chemotherapy – the survival rate was 60 to 65 percent for patients 15 years after diagnosis. Now the survival rate is more than 85 percent. The disease can be fatal if it causes significant damage to organs, such as the heart, liver and kidneys. It also increases heart disease risk in women, according to the American Heart Association. With improvements in care, physicians are able to intervene earlier, impeding the disease from progressing to vital organs.
- Lupus affects women, particularly minorities, much more than men. Women ages 15 to 44 in the United States develop lupus nine times as often as men in that same age range. All minority women, meanwhile, are two to four times more likely to be affected by lupus than their white counterparts, and those cases tend to be more severe. Researchers don't know why that is the case, but research conducted at the Rush Lupus Clinic leads Jolly to believe it’s partly due to psychosocial reasons: "Socioeconomic status, education level, health behaviors, compliance with treatment, access to quality of care — that all seems to play a role," Jolly says. "But there may be other reasons associated, too, so the research community continues to search for answers."
- Resources are available to improve quality of life for people with lupus. Symptoms may limit a patients' ability to participate in some physical activities, thus affecting their self-esteem, and the side effects from medications sometimes add to their fatigue. Medications and the disease itself can cause changes in appearance such as from rashes and hair loss. However, counseling and aesthetic resources, which incorporate the use of wigs and makeup, can assist patients in dealing with appearance issues. "Access to resources can significantly help a patient’s self-esteem and ability to live a more complete life," says Jolly, who makes these resources an important part of her care for patients.
More Information at Your Fingertips ...
- Want to learn more about lupus? Attend a free event at Rush on Tuesday, May 17, from 6 to 8 p.m., where rheumatologists Meenakshi Jolly, MD, and Winston Sequeira, MD, from the Rush Lupus Clinic will discuss how early diagnosis and timely treatment can help prevent or limit organ damage. To register or for more information, call (888) 352-RUSH (7874).
- There are a number of clinical trials open at Rush for lupus and other rheumatology disorders. To inquire about studies that may be open to enrollment, call (312) 942-2167.
- Looking for a doctor? Call toll free: 888 352-RUSH (888 352-7874)
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Please note: All physicians featured in Discover Rush Online are on the medical faculty of Rush University Medical Center. Some of the physicians featured are in private practice and, as independent practitioners, are not agents or employees of Rush University Medical Center.
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