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Living Successfully With Lupus

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When Toronto writer Kathy Shaidle found out she had lupus, she decided to look on the bright side. "Hey! I'll be able to write a book about this one day," she told herself.Dubbed "the disease of a thousand faces," lupus touches every person differently.

When Toronto writer Kathy Shaidle found out she had lupus, she decided to look on the bright side. "Hey! I'll be able to write a book about this one day," she told herself.Dubbed "the disease of a thousand faces," lupus touches every person differently. For some, its effects can be relatively mild: sore joints, fatigue and rashes. In others, it can damage vital organs, lead to neurological disorders ranging from memory loss to hallucinations, and leave sufferers in constant pain.

An autoimmune disease, lupus occurs when antibodies produced by the immune system attack the body's own tissue. No one has yet pinpointed the exact cause of the disease or how it short-circuits the immune system. A current theory suggests that improper processing of dying cells triggers the malfunction. Since lupus affects nine times as many women as men and often strikes during or after a pregnancy, many researchers believe it may be linked to hormone imbalances such as excessive levels of estrogen or low levels of androgen. The usual suspects diet, infections and stress have also been named as possible factors in its onset. An unusual suspect is leaky gut syndrome, which is believed to be an underlying factor in a wide variety of autoimmune diseases, including lupus, multiple sclerosis and arthritis. Certain medications, including oral contraceptives, high blood pressure medications and sulfa drugs (antibiotics), can also be triggers.

Lupus generally strikes women between the ages of 14 and 40. Those of African, Asian and aboriginal descent are at especially high risk. Some may also have a genetic predisposition to the disease. Happily, improved treatments have demoted the disease from a once-fatal illness to a debilitating but generally manageable one. According to psychologist Robert Phillips in his book, Coping With Lupus (Avery, 2001), 80 to 90 percent of people with lupus can expect to live out a normal lifespan.

Living Life to its Fullest

Shaidle had just turned 27 when the disease's trademark symptom, the "butterfly rash," appeared across her nose and cheeks. At first, she recalls, "I thought of the diagnosis as an exciting adventure, a character-building challenge." That grew harder as she dropped to 85 pounds, became bedridden with arthritis and found herself literally unable to shrug off the pain, because shrugging hurt too much. Spells of severe illness known as "flares" came and went with seemingly little provocation, making it tough to plan ahead or snatch enjoyment out of everyday life.

Since lupus affects people in different ways, each course of treatment must be tailored to the individual. Standard medical therapies include a regimen of blood-thinning drugs (anticoagulants) to prevent blood clots and steroid medications to help reduce tissue inflammation. If you're taking these drugs, it's worthwhile to consult a naturopath or wholistic physician for natural alternatives free of side-effects. Proteolytic enzyme therapy, which involves a temporary worsening of inflammation to reduce tissue swelling, has also been used as a treatment.

Fitness and Nutrition

People with lupus need regular physical therapy to relieve stress, improve joint function and counter the calcium-depleting side-effects of steroid drugs. Most experts recommend they stick to gentler forms of exercise, such as walking and swimming, and movement therapies like yoga and Tai Chi.

Rest is just as important, since people with lupus can become easily fatigued. The Lupus Foundation of America recommends they revise their daily schedules to include naps and eliminate tasks that demand too much energy.

Having lupus wreaks havoc with a healthy appetite. The inflammation of stomach muscles will inhibit hunger, while steroid medications will cause it to increase. As a result, people with lupus often find their weight fluctuating wildly.

A diet low in fats and calories, with plenty of water, fish and fresh, enzyme-rich vegetables, will help stabilize their weight and strengthen their constitution. Some experts advise eating cruciferous vegetables such as brussels sprouts, kale and cabbage, since they contain indole-3-carbinol (I3C), a substance that balances the metabolism of estrogen.

At the same time, people with lupus should keep hard-to-digest dairy (such as homogenized milk and processed cheese) and animal products to a minimum, and avoid caffeine, sugar and vegetables in the nightshade family (potatoes, eggplant, peppers and tomatoes). One particular dietary no-no is alfalfa sprouts, which have been known to set off flares.

Phillips suggests trying the herbs black currant oil, ginger, feverfew and turmeric to ease inflammation and reduce pain. On the other hand, he cautions against herbs that boost the function of the immune system although echinacea has been known to successfully relieve pain in people with lupus.

Aids for the Spirit

As hard a toll as lupus takes on the body, it often takes an even harder toll on the spirit. "Common emotional reactions to having lupus include depression, fear, guilt and anger," notes Phillips. To help process their tangle of emotions, many people with lupus join self-help groups or use relaxation techniques such as visualization and self-hypnosis.

The deeply spiritual Shaidle found prayer a great aid in her struggle with the disease. She also used humour as a therapeutic tool, dissecting her condition with razor-sharp wit in a series of popular newspaper columns.

"One nice thing about lupus is the photosensitivity," she wrote, "which means I get to wear sunglasses whenever I want. Totally cool."

Shades on, she has continued to look on the bright side 12 years after her initial diagnosis. "I am still sorting out all the lessons I have learned," she remarks. Even as she enjoys the respite of remission, she still believes "the illness made me a better person." And, she adds pointedly, she did indeed get a book out of it it's called God Rides a Yamaha and was published in 1998 by Northstone Books out of Winfield, BC.

Supplements to Combat Lupus

The following supplements available from health food stores should be used in conjunction with prescribed medication. As lupus is very serious autoimmune condition, please confer with your health-care provider.

Sterols and Sterolins

Take two capsules three times a day for one week,
then one capsule three times daily thereafter. Controls antinuclear antibody production, regulates cortisol, serves as an anti-inflammatory and naturally enhances DHEA (a naturally occurring hormone important for the immune system).

Quality antioxidant containing vitamins A, B6, C and E, magnesium, zinc, lipoic acid, selenium, coenzyme Q10 and reduced L-glutathione

Take three capsules daily with food. Supports healthy immune function, detoxifies the liver, serves as an anti-inflammatory and protects against nutrient deficiencies.

High-potency B complex containing folic acid

Take two capsules daily. Reduces stress, helps the body's metabolism and lowers homocysteine levels, thereby reducing the onset of atherosclerosis.

DHEA

Take 200 milligrams daily, under a physician's guidance (DHEA is available through prescription only). Can help alleviate symptoms and reduce the need for the
steroid prednisone.

Lactobacillus acidophilus

Take one teaspoon daily. Improves intestinal flora to
aid digestion.

Omega-3 fatty acid

Take one tablespoon of flax seed oil twice daily, 1,000 mg of evening primrose oil three times daily or 500 mg of fish oil three times daily. Reduces or prevents inflammation and slows the onset of autoimmunity.

Proteolytic enzymes

Take two or three capsules daily. Serves as a potent anti-inflammatory.

Source: Healthy Immunity, Scientifically Proven Natural Treatments for Conditions from A-Z by Lorna Vanderhaeghe (John Wiley & Sons Canada, 2001)

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