Lupus is a disease of the autoimmune system. Learn what it is, its symptoms, and some helpful ideas on coping with it.

“Lupus” means “wolf” - fitting for a disease that often appears disguised as something else.

No one knows why Systemic Lupus Erythematosus causes the body’s autoimmune system to attack healthy cells. No two sufferers exhibit identical symptoms, making diagnosis difficult and time-consuming. Fatigue is a frequent complaint, with fever and weight loss occurring in more than 60 percent of patients.

“Living with an illness that can have you on your deathbed one day and running and playing with the dog the next CAN work on a girl’s nerves,” says Cheryl Washington, 37.

Diagnosed in 2002, this newspaper editor experienced three years of remission but has also struggled with life-threatening lung involvement and nephritis (kidney disease) as well as the debilitating joint pain that led to her diagnosis during a routine physical.

At least 4 of the following symptoms be present to confirm a diagnosis:

1- malar (butterfly-shaped) rash across the face;

2- discoid rash - raised, scaly rash on body;

3- sun sensitivity;

4- ulcers in mouth or nose;

5- inflammation of joints;

6- inflammation of lining of lungs or heart with resulting chest pain;

7- kidney disorder - protein or blood in urine or kidney failure;

8- nervous system disorder, such as seizures; psychosis, strokes;

9- blood system disorder, such as hemolytic anemia;

10- immune disorder, such as presence of LE cell containing two nuclei rather than one and a false positive reaction to the test for syphilis; and

11- a positive ANA test, signifying the body’s production of antinuclear antibodies, which work against cell nuclei.

As a woman, Washington is in the largest category of those affected (90 percent of America’s estimated half million). As an African-American, she is up to four times more likely to get the disease, according to the Oklahoma Medical Research Foundation. Though it’s not known why more women get lupus, new research suggests that sex organs and hormones may play a role.

Dealing with the unpredictable

Onset of the disease usually occurs between the ages of 15-45. Rheumatologist Mark Gourley, MD  has noted that it tends to hit precisely when women are just beginning their adult lives - finishing college, launching a career, getting married and starting a family. Its effects range from moderate inconvenience to more severe disability, and can even prove life-threatening.

Beth, a fair-skinned, 34-year-old New Jersey mother, can never risk sun exposure by playing on a beach with her children, ages 8 and 11. Diagnosed in 2009, she also suffers from chronic joint pain, chronic fatigue, and has had lupus-related kidney, and heart and lung involvement.

“This illness has put me out of work twice and I am presently trying to change careers as my job as a probation officer has been too stressful,” she says. An added challenge of the disease is that a sufferer can feel fine one day and be sick enough for hospitalization the next.

In the nine years since her diagnosis, Washington has experienced up to two years of remissions, but has also had lung involvement that placed her on a respirator, and the kidney disease nephritis) that has required her to receive outpatient chemotherapy over the last year.

The impact of lupus for women goes well beyond the physical. “From a behavioral aspect, there is a very high incidence of divorce within five years of diagnosis,” said rheumatologist Daniel Wallace, MD.

“Living with a chronic illness creates a lot of emotional stress,” says Beth, now divorced and a single mother. “Sometimes I feel less of a person because I am not working, and have no energy to do household things or go out with the children and do fun things.”

Rheumatologist Robert Lahita, MD, author of Lupus: Everything You Need To Know, says lupus can be triggered in susceptible people by sun exposure that causes a sudden rash, or a cold or infection that develops complications. Sometimes prescription drugs produce symptoms, while some women first show signs during pregnancy, or soon after delivery.

Ironically, pregnancy can often be a time when sufferers experience temporary relief from symptoms. “I felt very good when I was pregnant. … I was feeling so great physically that I wanted to be pregnant ALL the time,” laughs Beth.

Most people with lupus can lead normal, active lives if they learn to recognize signs of “flares” - intensifying of symptoms - that characterize the disease. The goal is to control these and develop a regimen that suppresses symptoms. Regular laboratory tests can detect whether the disease is becoming active even before symptoms resurface.

Sufferers minimize the risk of flares by avoiding excessive sun exposure, applying sun screen, exercising to prevent muscle weakness, and getting immunized against infectious illnesses.

They also learn to avoid stress, a major trigger of flares.

“I take steps to keep the stress levels at a minimum,” says Washington. “I avoid negative people. I don’t waste my time worrying about things that are not within my power to change.”

“You never know when you will flare, so I try to make the most of a day when I feel well,” says Beth. “I keep the house stocked with easy meals and snacks so the kids can do for themselves. I taught them how to sort laundry, clean the lint trap, and change the wash to the dryer. They do their homework and play quietly while I rest. … I just wait the flares out as there really is nothing more that can be done.”

Maximizing quality of life

Treatment depends on individual symptoms, which organs are affected, and the severity of involvement. Most with lupus find that treatment minimizes symptoms and helps maintain normal body functions.

Commonly prescribed medications include NSAIDS (non-steroidal anti-inflammatory drugs) such as ibuprofen for joint pain and fever; Corticosteroids like Prednisone to reduce inflammation and suppress immune-system activity; Antimalarial drugs such as Plaquenil to alleviate skin and joint symptoms; Anticoagulants, to prevent blood clots; and Immunosuppressants such as Cytoxan, to block production of some immune cells in patients with kidney and central-nervous-system lupus.

Washington says sufferers tend to take a life a day at time, and become knowledgeable about this disease that requires excellent communication between a woman and her doctor.

“I’ve researched treatments, alternatives, medications, and side effects on my own because I’ve sometimes felt that doctors weren’t being as forthcoming with information as they could have been,” she says. Doctors may fail to take the illness seriously and tell women “it’s all in your head,” she notes.

“Many people look at me and say ‘you don’t look sick’ making me feel as if they do not believe me,” says Beth. .”This disease also makes me need to care for myself more, something I rarely did in the past and am still perfecting today.”

Stephen Balch, M.D., F.A.C.P., notes that those who manage lupus well “focus on their current talents and abilities.” They take responsibility for their health, understand their options, recognize lupus is not their whole life, and reach outside themselves to help others.

“Lupus has helped me focus more on the important and meaningful things: family, friends and love,” Washington says. “Once I decided that I was not going to let this disease take over my life, I was free to be me again.”