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When the body attacks itself

Victims of the autoimmune deficiency disease called lupus suffer with symptoms that keep them prisoners of pain

Victims of the autoimmune deficiency disease called lupus suffer with symptoms that keep them prisoners of pain

June 10, 2002|by KEVIN CLAPP

kevinc@herald-mail.com

He sits in a recliner, feet propped up as he takes another sip of water to keep his throat moist.

When it comes time to move across the room to show the bone scan pictures that illustrate how rheumatoid arthritis has ravaged his body from head to toe, the methodical effort to rise up is noticeable.

Funny thing is, by outward appearances, the 42-year-old looks as if he could bench press you with one hand tied behind his back while stifling a yawn.

You see, David Thomas is a small bear of a man at 6'2", 247 pounds. But there are days when his 70-year-old mother has to pull him up and out of bed, and if not for the company in their living room shortly after noon, he'd still be in bed.

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All because of a disease, lupus, that is slowly turning Thomas' body against itself.

Fatigue is just the first in a laundry list of ailments. Sleeplessness, sleepiness, burning and itchy rashes (when he shaves, razor blades are used only once to prevent rashes from spreading), the arthritis ... all do their part to fell the former chef and restaurant owner.

"You wake up through the night. Sometimes every hour, sometimes you'll wake up for two, three hours and then there are days when I lay in bed for three, four days and do nothing but sleep," he says. "You just get so fatigued. It's not tired like the end of the night you watch the news and go to bed. You feel like you've worked in the field, plowing the field by hand, 100 acres, by yourself."

Lupus, an autoimmune disease, is an enigma, hard to diagnose and consisting of more shades than a color wheel.

Patients have immune systems that are out of control, confusing healthy tissue with disease and attacking it. Thomas, for example, says he has 60 percent more white blood cells than necessary.

Mild forms of lupus can result in skin rashes. More severe diagnoses include arthritis and organ distress.

Of approximately 1.4 million lupus patients nationwide, the majority have a mild version of the disease treated with over-the-counter creams or painkillers. Thirty-five percent of sufferers, though, have organ threatening disease.

Anti-malarial drugs are used to combat severe symptoms, as are corticosteroids. The danger then is the side effects that come from taking such drugs.

Martinsburg, W.Va., rheumatologist Michael Rezaian says side effects can include increased likelihood of osteoporosis and elevated cholesterol levels.

There is no cure, and since symptoms are so diverse, diagnosis can take time. Karen Johnson, health educator with the Lupus Foundation of America, says if there are 20 symptoms, each patient presents a different hodge-podge of indicators.

"People will ask, 'What can I do for this' and I will say there is no set protocol," Johnson says. "If you feel like you meet the criteria (for lupus) then you need to keep pursuing a diagnosis. And that might mean seeing five doctors over five years but they just have to keep going, as frustrating as that is."

Pat Thomas sees the frustration in her son, feels the brunt of it sometimes when the disease causes him to lash out.

When symptoms first cropped up in January 2000, they thought David's sleeping binges and facial redness were a reaction to his father's death a month earlier.

The lupus diagnosis came a year and a half ago. He had never heard of the illness.

"When he sleeps and sleeps it worries me because I know that it's part of it but it's still hard not to worry about it," Pat Thomas says. "And this morning when I tried to wake him he just talked incoherently to me and I had to work and work to get him up."

While anyone can have lupus, nine of 10 sufferers are women, and black women are three times as likely to have it as whites. Rezaian says it is unclear why minorities are more susceptible to the disease.

Most often, patients seek help because of the fatigue that arrests their ability to function from day to day.

"Fatigue seems to be there all of the time," Rezaian says. "Most of the time you'd think if they get to sleep it will help but they go to sleep tired, they wake up tired."

One problem facing lupus patients and advocates, according to Lupus Foundation of America Vice President for Advocacy and Communications Duane Peters, is a lack of awareness about the disease.

True enough, David Thomas talks of stares from strangers gazing at the splotchy red skin on his face, or disapproving looks from others who see him park in handicapped spaces and figure he must be manipulating the system out of laziness.

If only they knew.

"Because lupus is such a diverse disease, it's hard for the public to conjure in their minds what lupus is," Peters says. "With breast cancer or AIDS, it's very easy for the public to conjure an image in their minds. ... On the one hand we don't want to cause undue fear. By the same token, people do die from lupus."

On his best days, Thomas can still whip up a birthday feast for his mother, as he did last fall.

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