Upper Marlboro woman struggles to raise awareness of lupus

Debilitating disease lacks ‘a household name’

‘‘With [lupus], I lost a lot of strength and desire to do things,” Datcher, of Upper Marlboro, said. ‘‘I went into depression and had to accept the fact that I wouldn’t be the same person I used to be.”

Datcher, 39, has learned to live with the sometimes debilitating effects of lupus, which can make it difficult for her to do anything from driving her stick-shift car to opening a soda bottle. She devotes much of her free time to spreading awareness of the disease in her community, participating in online support groups and raising money for research through the Alliance for Lupus Research.

The disease’s symptoms can be lessened through treatment, but it is incurable. Its cause is also unknown, though research suggests that it is genetic.

At least 1.5 million Americans have been diagnosed with lupus, according to the Lupus Foundation of America. The Centers for Disease Control and Prevention estimated in 2002 that 1,406 people died from the disease in 1998. Lupus can be fatal when it causes the body’s immune system to attack organs.

Lupus usually appears in people between the ages of 15 and 44, and 90 percent of sufferers are women. The disease also predominately affects minorities.

As much as it has affected her own life, Datcher said she has had a hard time soliciting local help for awareness events because ‘‘a household name has not been attached to lupus.”

Datcher said she has worked since 2005 to raise donations and volunteers for annual walks in Washington, D.C. hosted by the ALR. She sends about 200 letters and e-mails to local businesses and organizations each year asking for contributions.

Datcher raised about $1,400 from 20 contributions for the 2006 and 2007 walks. She has raised $75 so far for this year’s walk, which is scheduled for November.

‘‘It’s really hard to get interest from people, and that’s the problem I’m running into,” said Datcher, an employee of the U.S. Department of Veterans Affairs.

She said that this year, she is trying to branch out in her efforts by asking area professional sports teams to hold ALR fundraisers during their games. So far, Datcher said the only positive response has come from Baltimore Orioles officials, who asked her to provide more information on her request.

‘‘She is doing everything that she possibly can to increase awareness about lupus and raise money for research,” said Sheri Kirkpatrick, the northeast regional fundraising coordinator for ALR, which has given more than $50 million to research since 1999. ‘‘She’s been banging on doors, talking to family and friends; talking to people she doesn’t know, doing everything she can to further her goal, which is to help find a cure for lupus.”

Datcher said more awareness is needed because people can suffer from lupus without knowing they have it. Many people either ignore their symptoms until the disease worsens or, like Datcher, are misdiagnosed at first with arthritis.

Datcher said most people do not understand what it is like to suffer from the swelling, aches and fatigue brought on by lupus.

‘‘With lupus, because a lot of people don’t know what it is, they don’t understand. They say you’re just being lazy,” she said.

Taking steroids every day usually eliminates the symptoms, but they flair up periodically and can last from a day to a couple weeks, Datcher said. Sometimes when it is bad, she cannot get out of bed.

Antwan Coley, a friend and former supervisor of Datcher’s when she worked in contract security, said she saw Datcher struggle with the disease at work.

‘‘I watched her when she had her bouts, where she could hardly use her hands, and the swelling, and hives, and all the physical stuff that goes along with lupus,” said Coley, who regularly donates to the ALR in Datcher’s name.

‘‘That’s when I really started to sympathize,” she said.

Even though Datcher’s disease can sometimes make her life difficult, she said she has put it in perspective.

‘‘I feel blessed because I read stories of people whose condition is far, far worse than mine,” she said.

To contribute

To make a donation, send checks to the Alliance for Lupus Research office at 28 W. 44th Street, Suite 501, New York, NY 10036. Make checks payable to the Alliance for Lupus Research. To sponsor Lisa Datcher of Upper Marlboro for the Nov. 2 walk in Washington, D.C., include the identification number ‘‘DC-510000” in the memo line of the check.