The New Normal: Adjusting to Life With Lupus

Janice Wolfe-Easley's life before lupus was a swirl of activities -- exercise, sailing, volleyball on the beach with her husband and 60-mile breast cancer walks. For more than three decades she taught physical education to children with disabilities, but had to retire early because the pain from her disease prevented her from keeping up with the kids.

Now at age 58, and nearly five years into her lupus diagnosis, any of her daily plans can be upset by the disease. Some days, she showers and blow dries her hair for a night out, but then fatigue takes over and she climbs into bed instead. Other days, she stays in her pajamas.

"You get used to the new normal," she says. "You figure out what your life is and what adjustments you need to make."

Like the 1.5 million other Americans with this chronic autoimmune disease, Wolfe-Easley is often in pain. "It's like my body is allergic to itself," she says. Antibodies typically protect the body from bacteria, viruses and germs, but in people with lupus, antibodies can't differentiate invaders from healthy tissues and end up attacking the tissues. Besides pain, people with the disease can suffer from inflammation and severe damage to their kidneys, lungs, heart and nervous system.

The exact cause is not known, but Gary Gilkeson, chairman of the Lupus Foundation of America Medical-Scientific Advisory Council, says researchers believe the environment, genetics and hormones are involved.

Wolfe-Easley says she began to experience symptoms only a month after going off a low-dosage birth control, and doctors suspect that may be a potential cause. On the day of her interview with U.S. News, she has been up and about. "I am feeling rested this morning," she says. "I had a good night's sleep." She plans to take a nap later because she organized a dinner with her lupus support group in Alexandria, Va. "You don't know what's going to do you in," she says.

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Awareness Gap

For fans of the Fox television series "House," Dr. Gregory House's tendency to say "It's never lupus" when trying to diagnose a disease has become a catchphrase. Only in one episode, titled "You Don't Want to Know," which aired in 2007, was the diagnosis actually lupus.

Despite the lupus reference in nearly every episode of "House," the debilitating nature of the disease remains widely unknown to the public. "It's a very isolating disease because so much of it is invisible," Wolfe-Easley says. "So many people will look at me and say, 'You look OK.' They don't know what's going on inside. You don't want to take another step or say another word."

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The symptoms of lupus vary vastly by individual and can come and go throughout a person's life. Some symptoms mimic those of other diseases, such as rheumatoid arthritis, Lyme disease or celiac disease. Symptoms include fatigue, headaches, painful or swollen joints, fever, anemia, chest pain, light sensitivity, hair loss, fingers turning white or blue when cold, and mouth and nose ulcers. A butterfly-shaped rash across the cheeks and nose is one of the easiest visible clues doctors have in diagnosing the disease.

Women who are of childbearing age are 10 times more susceptible to lupus than men, and Asian, Hispanic and black women are two to three times more likely than white women to get it, according to the Lupus Foundation of America.

There is no single test for lupus, though doctors can use an ANA test, which measures whether a person's immune system is attacking the body. Still, 15 to 20 percent of those who test positive do not actually have lupus. A variety of lab tests and observations of physical changes are needed to make a full diagnosis.

Wolfe-Easley knew to ask for a test because a cousin and close friend had the disease, but another patient, Robyne Walker-Murphy, a 40-year-old from Brooklyn, N.Y., waited 3.5 years until doctors landed on a correct diagnosis.

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The Face of Lupus

For Walker-Murphy, the decision to help spread the word about lupus is one of social justice, she says, particularly because the disease affects so many black and Hispanic women. She plans to participate in the lupus walk in New York in May, only a year after her diagnosis, and has written about her disease on Facebook. "Admitting that I had lupus was scary," she says. "I didn't want people to tell me that I couldn't do things or that they couldn't expect things from me."

She finds her involvement parallels her career as director of early childhood and family programs at the DreamYard Art Center in the Bronx, which supports art for social action.

Walker-Murphy's 1.5-hour commute to work can be a struggle. She has modified her schedule to work from home on Fridays, and she now listens to her body when she needs to rest. "I'm learning to be comfortable not doing as much," she says. Her feet, legs and joints often ache, and she is dreading the summer. "The way the sun feels on my skin is as though I'm inside a microwave," she says.

She thinks often about her hair, which is thinning and doesn't grow. Clumps come out in her hands when she runs her fingers through it. She knows her hair will eventually be gone, and it bruises her spirit.

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Managing the Disease

While various treatments for lupus exist, there is no cure. Still, Gilkeson says people have reason to be hopeful. In February, $230 million in funding from the government and other sources was allocated to the National Institutes of Health to develop new medicines for lupus and other diseases. People with lupus can also live a normal life when they manage the disease. The prospect of survival is 95 percent, up from 50 percent during the 1950s, according to Gilkeson.

The disease is mostly managed through medication. Most drugs, however, are not approved by the Food and Drug Administration for the treatment of lupus. This can be a problem for some patients because certain insurance companies will deny off-label prescriptions, and some medications can cost $600 to $700 a month when insurance companies don't cover them, Gilkeson says.

For Walker-Murphy, the cost is not a problem, compared to her symptoms. A few weeks ago she was in the hospital with the flu, coughing up blood, unable to breathe and thinking she was never going to leave the hospital. "It's a cruel disease that can take away a lot of joy," she says.

Wolfe-Easley feels a similar way, saying she would love to see a cure for the disease. She tears up and says: "It would be nice to say one day that I used to have lupus."

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