Karen York has lived with lupus since being diagnosed in January 2005. While there is no cure, she said lupus is not a death sentence.

"Like many people with chronic diseases, especially after the initial diagnosis, I went through a period of depression," said York, Richland School District One's director of communications and former Times and Democrat city editor.

"It's hard to describe what it's like to have lupus. The thing I have to fight most every day is extreme fatigue. Sometimes it's a real struggle just to get out of bed and get going in the mornings," she said. "I like to stay on the go, but I have learned to listen to my body when it's telling me that it's time to sit down or lie down and rest."

According to the Lupus Foundation of America, lupus is a chronic autoimmune disease that can damage any part of the body, which cannot tell the difference between foreign invaders and healthy tissues. Lupus attacks cause redness, swelling and pain characterized by flares and remissions.

The two major disease forms are discoid lupus, which affects the skin, and systemic lupus erythematosus, which affects the internal organs. Some individuals have both forms.

The two drugs currently approved by the Food and Drug Administration for lupus treatment are Plaquenil for skin problems and prednisone for SLE.

Karen Redding, president of the South Carolina chapter of the LFA, said she is trying to establish lupus support groups in all 46 counties. Currently there are only eight, including one in Orangeburg.

"Facilitators have to undergo training before they can run a lupus support group," Redding said. "Right now, we are looking for a facilitator to be over the Orangeburg support group."

Redding said the estimated number of lupus patients in the state was 22,431 in 2003, the latest figure available. There were 663 people with lupus in Bamberg, Calhoun and Orangeburg counties. The majority of these, 493 patients, were in Orangeburg County.

Although anyone can develop lupus, nine out of every 10 sufferers are women. Native American populations also develop the disease more than other ethnic groups.

T&D Correspondent Sherryl Peters was diagnosed with lupus five years ago. She said the flare-ups are wild and unpredictable.

"People are not understanding of these symptoms. It is painful for me to be touched, hugged, patted or (given a) handshake," Peters said. "I avoid these activities, but I understand that people I don't know are going to do them as a social contact.

"Other symptoms I cope with daily include joint swelling and pain, chest pain, breathing problems, extreme headaches, inability to bend at the waist, inability to remain in the sun for very long. Sometimes, even wearing clothes is painful. No coats or sweaters or even closed-toe shoes. I just can't stand them, and I am too hot to wear them anyway."

Redding said York and Peters are among the luckier lupus patients in that they are still able to work to some degree.

"Normally, about 60 percent of those with lupus are on disability, and 25 to 30 percent of them are looking to go on disability," Redding said. "Most don't have insurance."

The S.C. chapter has no paid workers. Redding said the group's primary fund-raisers are Lupus Walks, which are held throughout the state. With the exception of postage and phone costs, the funds go back out to pay for the needs of lupus patients.

York said lupus is still under the radar.

"I don't try to hide from people that I have lupus," York said. "But I'm sure there will be people who will read this and ... who will say, 'But she doesn't look sick.'"

For more information, contact the S.C. chapter of the LFA toll-free (in S.C. only) at 1-877-895-8787 or visit lupus.org.

T&D Staff Writer Phil Sarata can be reached by e-mail at psarata@timesanddemocrat.com or by telephone at 803-533-5540.

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