By Annette Pinder
Approximately 1.5 million Americans have a form of lupus, and 90 percent are women. Daily activities can be a struggle and inconsistent for those living with lupus. Despite experiencing debilitating symptoms, many people with lupus don’t look sick. Often referred to as “the great imitator,” lupus disguises itself to look like other conditions such as rheumatoid arthritis, fibromyalgia, diabetes, Lyme disease, various blood disorders, a thyroid problem, or other heart, lung, muscle, or bone diseases, making it difficult to diagnose. To further complicate their care, individuals diagnosed with lupus frequently have other autoimmune disorders.
People with lupus understand the daily struggles that come with this disease and look to developments in ongoing research and information.
What is lupus? Chronic lupus is an autoimmune disorder that affects the skin, joints, kidneys, brain and other organ systems. While patients experience symptoms differently, symptoms such as extreme fatigue, headaches, fever, painful joints, anemia, chest pain, hair loss, abnormal blood clotting, or other symptoms are common. These symptoms may come, go, and can change throughout the course of the disease.
Who is at risk for lupus? Lupus can affect people at any age, but it most often affects women between the ages of 15 and 45. African American, Hispanic, Asian, and Native American women have a higher risk of developing lupus.
How is it diagnosed? There is no single test to diagnose lupus. It often takes months or years for a doctor to diagnose lupus, as precious time is lost during which the disease advances. Various laboratory tests are used to detect and monitor physical changes or conditions that may appear as a result of lupus. While not a diagnosing tool, the ANA (Antinuclear Antibody) test is an essential screening tool that tells doctors to look for other signs of lupus.
How is lupus treated? There currently is no cure for lupus. In fact, over the last 50 years only one medication has been approved to treat this disease. All other treatments are “off label” and include antimalarial, chemotherapy, and steroid medications. While many drugs reduce the signs and symptoms of lupus, they carry side effects, many of them serious, including damage to the body’s organs with prolonged use. Treatment plans help prevent and treat flares, the recurrence of symptoms, and reduce organ damage.
How can I learn more about lupus research? Physicians nationwide are participating in various clinical studies regarding lupus. To learn about some of these, visit https://lupustrials.org and https://www.lupus.org.
What local resources are available? The Lupus Alliance of Upstate NY recently launched a monthly video series, daily messages of encouragement, a quarterly newsletter, regional symposiums, other helpful resources. See the information box below for links. The Lupus Alliance of Upstate New York is located at 438 Main Street, Suite 203, Buffalo, NY 14202. Learn more at www.lupusupstateny.org or call 716-835-7161.
