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Living with Lupus, One Day at a Time

By Candice Mitchell
Black College Wire

Photo credit: Morine Etienne/Campus Echo ViAngela Roach prepares to take her daily medication. Roach, 19, was diagnosed with lupus in 2004.

Imagine a bad day: Your joints hurt so much it's hard to get out of bed. You can't keep your eyes open in class because of fatigue. You can't stay outside because the sun will irritate your skin.

Now imagine that you have a disease most people have never even heard of, a disease in which your body's immune system is attacking your own body's cells and tissues, and that there's no cure.

That's the situation that Faith Smith, a nursing junior at North Carolina Central University, and ViAngela Roach, an elementary education sophomore at the school, live with every day.

Smith and Roach both have a chronic, autoimmune disease called systemic lupus erythematous. It is commonly referred to simply as lupus. The disease principally affects the joints and the skin, but it also can damage other systems of the body, such as the kidneys.

Lupus is not infectious. According to the Lupus Foundation of America, about 1.5 million Americans suffer from the disease. It is two to three times more likely to strike people of color, and it is 10 to 15 times more likely to strike women.

Despite the unpredictable nature of lupus, Smith and Roach are determined to live normal, enjoyable lives.

Smith was diagnosed with lupus in November 1999 after being admitted to the hospital for dehydration. A kidney biopsy, a tool used in determining whether a person has lupus nephritis, showed the disease had inflamed and scarred her kidneys.

"Emotionally, I was terrified," said Smith.

"I never heard about lupus before."

Smith's mother, Elouise Payton, described the news as "devastating," but said that she was committed to helping her daughter navigate through life successfully.

"I believe it can be managed with proper rest . . . and by being knowledgeable [enough] to take control of lupus flares," said Payton.

Smith said that managing lupus is difficult.

"By being so active on campus, I don't have the time I would have if I was in high school," she said, adding that it's easy to get distracted. Smith's lupus was in remission when she was in high school, but that changed when she came to North Carolina Central in fall 2005.

She said being away from her family created stress, causing her lupus to flare.

"The best thing for me was to push myself and become physically active with proper rest and diet," Smith said. Smith now works out four to five times a week and eats foods high in potassium to prevent joint pain.

A typical lupus sufferer has a medication regime that includes steroids, calcium and iron supplements and an ibuprofen-based anti-inflammatory.

When she was in high school, ViAngela Roach led a very active—and sometimes stressful—life.

"I ran cross-country track up to my junior year in high school," said Roach.

"It was work, track and school. I was home at 11, just to be up at 5 the next morning."

Then, one day, her joints started aching. Shortly afterward, she collapsed in her bedroom. She remembers her father lifting her into bed—and then waking up in the hospital.

"I was in a coma for three days," said Roach. She said she remembers having a seizure and then being in the hospital.

"I am blessed to be alive. I could have died," she said.

Roach's blood pressure had jumped and she had developed anemia, a pathological deficiency in the oxygen-carrying component of the blood.

She was diagnosed with lupus in April 2004.

Her mother, Dianna Roach, didn't know what to think.

"At first I was upset," said Dianna Roach. "I didn't know much about lupus.

Dianna Roach said she's determined to help ViAngela see it through. "She'll always be mama's baby, regardless," the mother said.

Like Smith, Roach takes a regimen of supplements and medicines.

"I try to take it one day at a time," said Roach, who is active with Project SAFE, an HIV/STD peer education program, and other activities.

"The more I do, the less I think about getting tired," she said.

Roach said lupus has helped her become more tuned in to her body. "I'm more health-conscious now," said Roach. "You need to know if your body is changing, like if your hair starts to fall out or if your blood pressure starts to rise."

Roach said it is vital for her to communicate effectively with her doctor.

Dr. Mary Anne Dooley, director of the Rheumatology Clinic at UNC-Chapel Hill, is optimistic about future treatment for lupus

According to Dooley, six medicines are in trials for the disease. "The outlook on medical care is improving," Dooley said.

"People are living longer because we are able to diagnose and treat patients earlier."

While they wait for treatment and medicines to improve, Smith and Roach are determined to make the best of a negative situation. "It could have been worse," Roach said. Smith said having lupus has helped her realize how precious life is. "People look at lupus as a disability, but I don't want my lupus to be an excuse for anything," said Smith.

Smith said she plans to become a nurse. She said her experience led her to a deep appreciation of the profession.

"Lupus reinforced my purpose in life," she said.

Candice Mitchell, a student at North Carolina Central University who has lupus, writes for the Campus Echo.

Posted Nov. 10, 2006