The Lupus Foundation of America (LFA) market research data estimates 1.4 to 2 million Americans suffer from lupus, or one out of every 185: “more people,” it calculates, “than AIDS, cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined.” Lupus more often affects women who are black, American Indian, Asian or Hispanic than women who are white. Lupus also affects children and older people. Lupus can affect more than one family member, but there are no studies showing that lupus is an inherited disease.
Basically, lupus is the body’s immune system gone haywire: this disease-fighting system has lost the ability to tell the difference between foreign invaders, such as viruses and hazardous bacteria, and the body’s own cells and tissues. The antibodies meant to protect the body now attack it. Sun exposure is known to trigger disease activity, with symptoms including joint pain or swelling, fever, fatigue, skin rash, anemia, chest pains and a rash on any part of the body, most likely over the nose and cheek area in the shape of a butterfly. Lupus is also a rheumatic (arthritic) disease, and can affect the joints, muscles, skin, kidneys, nervous system, lungs and heart. The cause of lupus is unknown.
In the 1950s, a diagnosis of SLE meant a 50 percent possibility of death within 5 years. Today, there are more sensitive diagnostic tests and better treatments, which yield a 97 percent chance longer life span for someone with the disease. However, there is still no cure or specific treatment for lupus. Thursday, November 20, 2008 marked an unfortunate anniversary. It was 50 years ago the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus. It is heartbreaking to hear from those who have had hip replacements at an early age, men and women who have been forced to stop working, teens who are fearful they will have no future because of lupus, and women who are afraid they cannot have families.
Unfortunately, I am all too familiar with the struggles of lupus. My mother was diagnosed with lupus when I was 5 years old and lost her battle at the young age of 50. I am dedicated to helping others not suffer the way my mother suffered as well as helping families who are impacted by their love ones battle with lupus deal with the ups and the downs of the disease. I am currently Board President for the Pacific Northwest Chapter of the LFA. The Pacific Northwest Chapter serves Washington, Oregon and Idaho. The LFA is on the front lines of this effort to advance the science and medicine of lupus and to bring down the barriers that have impeded progress in lupus research. With the help of donors, researchers, and friends in Congress, the LFA is making advances toward safer, more tolerable, and effective treatments.
If you would like more information, please feel free to contact me or if you would like to donate towards the LFA’s efforts please go to http://www.lupuspnw.org/.
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