The Challenges of Lupus, Insights & Hope

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The Challenges of Lupus, Insights & Hope

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by Henrietta Aladjem

Avery Publishing Group, 120 Old Broadway, Garden City Park, New York 11040 USA; 800-548-5757

Website: www.averypublishing.com

Softbound, 238 pp., 1999, $14.95

Systemic lupus erythematosus (SLE) affects an estimated 1.4 million to 2 million Americans, according to a 1994 Lupus Foundation of America survey. The cause of this autoimmune disease remains a mystery; and, although doctors know some factors that can aggravate the symptoms, no one knows what causes the disease to go into remission or how to cure it. The severity of the illness and the symptoms vary from individual to individual. Henrietta Aladjem, who has written several books about lupus, was first diagnosed with the disease in 1953. For the past twenty years, Aladjem has experienced no symptoms of the illness nor has she needed any medication. Her most recent book, The Challenges of Lupus, consists of 40 articles that were written by both patients and doctors who have personal experience with the illness. Its purpose is to help lupus patients better understand what lupus is, what forms it can take, and what to expect from diagnostic procedures.

"Lupus can be serious or trivial; disfiguring or unnoticeable; painful or painless; life-threatening or of little consequence," writes Aladjem. Common symptoms of SLE include a butterfly-shaped skin rash across the cheeks and nose, anemia, arthritis (joint inflammation), nephritis (kidney inflammation), abnormal antibodies in the blood (anti-DNA or anti-Sm), and noticeable fatigue. Also, atherosclerosis, possibly initiated by inflammation damage to blood vessels, occurs more often in people with lupus. SLE tends to flare up, then go into remission. These flares are often triggered by infections, exhaustion, emotional stress, and over-exposure to the sun.

In addition to the physical effects listed above, SLE can also cause cognitive and behavioral changes due to inflammation that affects the brain and central nervous system. At least half of lupus patients encounter problems with memory and concentration. Severe or prolonged headaches, visual disturbances, abnormal body movements, seizures, and psychosis (delusions, hallucinations, and a failure to differentiate external reality from internal fantasy) are other possible symptoms. Although lupus itself can cause mental and behavioral disturbances, doctors and patients need to be aware that medications used to treat SLE can have side effects that cause similar changes in cognition, behavior, and emotions.

Although lupus can affect both genders and all ages, about 90% of lupus patients are female between 15-45 years old. Some researchers have speculated that estrogen may increase immune system activity, which could account for this high incidence among premenopausal women. Estrogen activity, however, does not explain the differing rates among races. Surveys in the United States, England and the Caribbean show that black women are three times more likely to get lupus than white women, and other women of color (Asian, Hispanic, and Native American) are twice as susceptible as whites. One known cause of lupus-type symptoms is pharmaceutical drugs such as procainamide, isoniazid, and hydralazine. These drugs are usually prescribed for middle-aged and elderly people. One of the articles in the book was written by a man whose hydralazine-induced lupus (skin rash on his face, fatigue, arthritis, and blood abnormalities) disappeared after he stopped taking the blood-pressure medicine.

"Many of the lupus patients express their discontent with the medical profession," writes Henrietta Aladjem. "They tell me that there is a need for a doctor who can listen to them and explain things in a comprehensible language." The Challenges of Lupus can help patients understand the medical terminology pertinent to this very complicated illness. This book explains the symptoms of lupus, the laboratory tests used to diagnose it, and the effects and contraindications of the various drugs currently used to control the disease. The book does not discuss any alternative therapies; but, I wonder if clues to Aladjem's own freedom from any signs of lupus over the past 20 years can be found in her words from the closing chapter: "I've become more aware of what is going on in my body and how to take better care of myself. I learned to stay out of the sun, eat a proper diet, stay away from harmful medications and avoid stress as much as possible. I've also learned to budget my strength and to rest and exercise whenever possible."

Townsend Letter for Doctors & Patients.

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By Jule Klotter

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