Lupus Support Groups Portland ME

Dancing with Wolves

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By Kimberly Lord Stewart

Whether she was playing tennis, gliding down the catwalks at European fashion houses as a model or chasing her four raucous children, my mother almost never showed any sign of the pain and discomfort she was suffering from her long-term battle with lupus. Though years earlier a blood clot had forced her to wear iron-thick panty hose, she never canceled a modeling appointment. Now at age 67, on the days when her joints ache, she still competes on the tennis court without giving in to the pain. Recently, she kept up with the fast pace of an election campaign and was chosen as a city councilwoman in Goodyear, Ariz.

Recently I, too, was diagnosed with lupus. Although the news was hard to hear, I am fortunate to have my mother as a wonderful role model.

Systemic lupus erythematosus (SLE), lupus for short, is an autoimmune disease named from the Latin word for wolf because patients often have a tell-tale rash across their noses that is similar to the facial markings of a wolf. As well, like an elusive wolf pack, lupus comes and goes—at times leaving a wake of serious illness but often leaving more subtle but nevertheless troublesome symptoms. Since the immune system is an integral part of every body system, the effects of lupus are far reaching. During the dark phases, called flare-ups, SLE can attack and inflame the kidneys, heart, lungs and brain as well as create a propensity for abnormal blood clotting. Less serious yet chronic everyday symptoms include joint pain, fatigue, hair loss, fever, migraines, mouth and nose sores, and skin rashes.

The tragedy of lupus is that it mostly attacks women in their prime—from their late teens to early 50s. There is no known cause, and research has been limited, despite the fact that between 500,000 and 1.5 million Americans have been diagnosed with the disease, and about 16,000 new cases are reported each year. At present, the best hunch is that the cause is a blend of genetic predisposition and environmental stressors. To test this theory, researchers at the Lupus Research Institute in New York City are sponsoring novel, broad-ranging research in rheumatology, immunology, genetics, nephrology, dermatology and cardiology to find answers to the causes and characteristics of a disease that has been ignored for too long.

The elusive nature of the disease makes diagnosis difficult—beginning in the 1970s it took my mother decades to get answers. Now diagnosis takes about three years. One problem is lack of expertise. There are only 4,000 board-certified U.S. rheumatologists with the know-how to recognize lupus, according to Sam Lim, MD, assistant professor of medicine for the Division of Rheumatology at Emory University School of Medicine in Atlanta. “We now have a better understanding of the immune system,” Lim says. “That said, every [lupus] patient is a challenge. Even I have trouble getting my arms around the disease sometimes.”

Because the disease itself is difficult to diag...

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