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Shopping for a catastrophic, life-wrecking illness? Consider Systemic Lupus Erythematosis. In addition to having an impressive name, this physician-confounding illness afflicts over a million Americans with an encyclopedic list of symptoms -- often starting with joint and chest pain, fever, fatigue and a mask-shaped "butterfly" rash over the nose and cheeks. Inflammation of the blood vessels in the brain, lungs or kidneys can kill up to 15% due to heart complications, stroke or pulmonary embolus.
Young black women tend to be affected most often, but a third of cases involve whites, and a fifth can affect men. Suspicion should increase if you are experiencing "Reynaud's phenomenon." Extreme sensitivity to cold makes a single finger turn white and painful from sudden spasm of the arteries -- a possible early sign of arterial inflammation.
After years of ignoring your symptoms, your doctor may finally stumble across this unpronouncable diagnosis when a blood test detects antibodies directed against the cell nucleus. But don't put to much faith in the result. A false-positive ANA is found in around 15% of normal people, and even if you fail to develop ANA titer, you could still have a broad spectrum of similar autoimmune illnesses that are equally puzzling -- each with its own terrifying symptom profile. SLE (often shortened to just "Lupus") has a highly unpredictable disease course. "Flares" are treated with steroids and toxic immunosuppressive drugs, however, during years of relapsing symptoms, you may have the uncanny feeling that your doctor doesn't have a clue about what to do next. Congratulations, your intuition is correct! Most doctors feel miserably inadequate treating Lupus patients, although they would never be so inconsiderate as to tell you.
The page you're reading now is proof enough that it's useless to go to the internet for help. Nevertheless you might want to visit the website of the Lupus Foundation where you can intermingle with thousands of others suffering a similar sense of injustice and share stories about new treatments that always seem tantalizingly out of reach. But don't give in to depression. There's no cure for SLE, but even advanced cases can fizzle out as unexpectedly as they started -- and maybe this attack with be your last.
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