University City

Group offers support for those with lupus

It's 7 p.m. and Shelly, a 45-year old Huntersville mother of four, suppresses a yawn during a meeting at the end of her day.

She's worn out, and after a while her head leans against the tall back of the chair. Her eyelids, struggling to stay open, begin to take longer to reopen after each blink.

It's not boredom or the common tiredness that finds many people by day's end. Like most with lupus, Shelly, who asked that her last name not be published, feels sheer exhaustion, often before she even gets out of bed in the morning.

"Sometimes I wake up and I can see the dark circles under my eyes more than other days," she said.

Lupus is an autoimmune disease that causes the body's immune system to malfunction, attacking not just foreign antibodies like viruses or bacteria, but its own healthy tissue as well.

Extreme fatigue is one of the few shared symptoms that link lupus patients. The disease otherwise manifests itself in many various ways, depending on which systems in the body it happens to target.

"It looks so very, very different from person to person," said Christine John-Fuller, president and CEO of the Lupus Foundation of America's Piedmont Chapter. "For one person, it's a skin manifestation and it's a rash or hair loss. For another person, it might be cardiopulmonary. Someone else, it might be kidney involvement, or even cognitive dysfunction."

Because it mimics so many other conditions, lupus is difficult to diagnose. More than half of all patients report learning their diagnosis up to four years after their first symptoms, and only after changing doctors three to four times.

Shelly's physician initially treated her for a thyroid condition, but it didn't ease her extreme fatigue.

"I was driving home from work and falling asleep, literally," she said.

Those who develop the disease - usually women ages 15 to 44 - often have to make drastic changes in their lives.

"I used to be a competitive swimmer," said Alex, a 15-year-old high school sophomore from Charlotte, whose doctor suspects she may have lupus. Some days she can barely muster the energy to walk up the stairs to her bedroom.

"From day to day, you really don't know how you're going to feel," said Pam Rogers, 49, who was diagnosed with lupus at age 18. "You can wake up feeling fine, go to school, go to work, then two hours later your body just shuts down."

Rogers, once an administrative assistant in a fast-paced brokerage firm, said she couldn't keep up with her hectic schedule after a while. "It has reduced my work. I had to take little jobs."

Twice a month she finds the energy to attend a support group for lupus sufferers that meets at Northlake Mall. They talk about how the disease is affecting their lives.

"My husband thought I was crazy. My kids thought I was lazy. My employer didn't understand why all of a sudden, after working there for 10 years, I couldn't do the same tasks I had always done. These are the kind of things that bubble to the top," John-Fuller said of discussions in the support group.

The Lupus Foundation of America's Piedmont Chapter, in conjunction with Carolinas Medical Center-University, sponsors the meetings at Northlake.

"The hardest thing is not being able to explain it enough for someone to understand," said Shelly. "My good friends know I have it, but they don't understand it enough. Unless you experience it, it's really hard to understand."