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Lupus group offers education, comfort, hope

Since being diagnosed with lupus three years ago, there have been times when Ellender Jackson has been so ill that her teenage daughters have had to bathe her.

The 1975 Lakewood High School graduate even had to leave her job.

She said she was fortunate to be able to turn to others who also suffer from the disease that afflicts about 2-million people nationally. African-American and Hispanic females are particularly susceptible to the disease, according to the Lupus Foundation of America.

Jackson, a St. Petersburg native, turned for comfort and education to the local Community Lupus Support Group.

The group, which began organizing in 1992, was chartered in June this year. Jackson is one of about 200 members and supporters. She was relieved to have found others with the same affliction and a group that has programs offering her knowledge about the disease.

"It helped me to understand what lupus is all about and that it really isn't fatal," she said. "It helped me to understand that somebody else was worse than me."

The disease's major symptoms, according to the Lupus Foundation of America, include achy or swollen joints, low-grade fevers, prolonged fatigue, skin rashes, pains in the chest when breathing deeply, sensitivity to ultra-violet light or sunlight and sores in the nose and mouth.

Most people who die of the disease succumb to kidney failure, said Duane Peters, director of communications and development for the Lupus Foundation.

"Primarily, for most people, it seems like an extreme version of the flu that never goes away," Peters said.

"It does indeed debilitate people in the sense that it prevents them from leading a normal life."

The local group, which draws most of its members from south Pinellas County, was founded by Josephine Morris after she realized that few African-Americans with the disease were getting the emotional support they needed.

"Everybody I talked to knew somebody with lupus, and I started writing their names down," she said. "I found a lot of people weren't coming forward in the African-American community because of all the things lupus does to you. I just wanted to help the people in our community as well as others."

Originally, said Morris, she traveled to Largo to attend meetings of the Suncoast Chapter of the Lupus Foundation of America. But she wanted something closer to home and got together with Yolanda Williams, and started meeting at St. Anthony's Hospital.

The group, which is not affiliated with any national organization, now meets at 6 p.m. on the third Monday of each month at Bayfront Community Resource Center, 100 Second Ave. N, Suite 100. Meetings also are held one Thursday a month at the Salvation Army, 1400 Fourth St. S. Dues are $10 a year.

Membership in the Community Lupus Support Group is not confined to those with the disease. Relatives and friends also are part of the organization.

Michael Capotrio, who works for Florida Power and does not have the disease, has been helping the group with its fund-raising efforts for the past couple of months.

"I knew nothing about the disease prior to me getting involved with the group," he said. "I had a co-worker who asked me if I would do some volunteer work with the group."

At the group's walkathon Oct. 25 at Lake Vista Community Center, walkers wore T-shirts with a logo designed by Capotrio. He also designed its souvenir booklets and signs for the event.

"I just have a need to do things for people and this was the perfect opportunity to do it," said Capotrio.

"The three volunteers from Florida Power do not have lupus. I just think that our Christian background just led us up that path."

Morris said it has not been determined how money raised from the walkathon will be used. However, money raised from an Oct. 10 banquet assists three families, she said. In one case, a donation will help pay the burial costs for a member of the support group. In another, the money is being used to help another member who has had 18 operations and is on dialysis.

Morris, who can no longer work because of the disease, says her mission with the Community Lupus Support Group is important to her.

"I just wanted the community to become educated about lupus," she said. "That it is not something you can catch."

The Lupus Foundation of America, with headquarters in Rockville, Md., gets about 38,000 calls a year about the disease, said Peters, director of communications and development.

"It has been around a long time," he said. "We are only now learning more about the disease in the sense that we know now that it has a genetic base with some type of environmental trigger. . . . We still don't have a definite, specific cause. We do not have treatments that are as effective as we would like. Lupus is, and remains a very devastating disease, life threatening and potentially fatal."

But the Community Lupus Support Group has givenEllender Jackson hope.

"I had to learn more about the disease," she said. "With the group, they were able to have different doctors and people of profession to come out and meet with us. If I was to sit home, I would not have that knowledge and, therefore, I can pass it on and share it with others."

_ For information about the Community Lupus Support Group, call 327-5057. For information about Lupus, call the Lupus Foundation of America Inc. (800) 558-0121

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