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Olympian Shannon Boxx rallies support to Lupus Foundation

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They gave Shannon Boxx a medal Saturday. Not exactly the most original gift for a woman who already has three Olympic golds plus two bronzes and a runner-up prize from her three World Cup appearances.

“She can add it to the collection,” joked teammate Abby Wambach with a smile. “Oh, and it’s silver.”

Actually, as medals go, it’s more like a purple heart since Boxx had to endure pain and display courage to earn it.

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Five years ago Boxx, a standout midfielder on the U.S. women’s soccer team, was diagnosed with lupus, a debilitating autoimmune condition with no known cure and one that, if left untreated, can be fatal.

That was the painful part.

The courage part came last spring when Boxx, who had largely kept her symptoms a secret, decided to go public in an effort to educate people about a disease that affects more than 1.5 million Americans.

“I didn’t want to be different. You keep those things quiet,” Boxx said. But “I just realized it was not working. It’s worth talking about it; giving my voice and using my voice to bring more attention to it.

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“At first I was nervous about it, like, ‘Is this the right thing for me to do?’ Now it’s a no-brainer.”

On Saturday, Boxx gave more than her voice, organizing a team of family, fans and friends such as Wambach to join some 5,000 others on a three-mile fundraising walk around Exposition Park. Boxx’s group raised more than $5,500 for the Lupus Foundation of America — hence the medal.

But you can’t put a figure on the amount of awareness she raised.

High school soccer players Karen Duarte and Lissandra Ledezma, who had never heard of lupus before last week, showed up with Boxx’s name and number painted on their faces and pledged $5 to walk with their favorite player. By Saturday afternoon Ledezma had changed her profile picture on Facebook to a shot of her and Duarte in Lupus Foundation T-shirts, flanked by Boxx and Wambach.

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Karen Torres, a 14-year-old lupus patient and soccer fan from Van Nuys, also came out to walk. She began to cry when asked what Boxx’s example meant to her.

“If she can do it,” Torres whispered through her tears, “I can do it.”

That’s a frequent reaction, says Sandra C. Raymond, the Lupus Foundation’s president and chief executive.

“An Olympic athlete who is pushing through some very devastating symptoms and consequences, who can stand up there and say that this is a disease that, while very serious, one can hopefully bring under control is a terrifically hopeful message,” Raymond said of Boxx stepping forward. “It was a courageous decision. And of course it helps us enormously.”

But it wasn’t an easy decision.

Boxx, who was a Parade All-American at South High in Torrance, suffered with pain and fatigue during her first six years with the U.S. national soccer team before doctors diagnosed her condition just months before the 2007 World Cup. Lupus is a chronic and unpredictable disease in which the body’s defenses turn against themselves. It primarily affects joints and muscles, causing weakness, numbness and severe joint pain, among other problems.

And though its complications can lead to organ damage and even death, mild forms of the disease can be controlled with medication — which is how Boxx managed to play four of the five U.S. matches in the 2007 World Cup before playing every minute of her team’s six matches in the Beijing Olympics, where the U.S. won gold.

“It’s pretty remarkable,” Boxx said. “You actually step back and you realize how debilitating the disease can be as far as the extreme fatigue — you can’t get off the couch, you can’t get out of bed — I am very impressed with the hard work that I’m still able to do and the amount that I can do.”

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And now Boxx, whose health almost forced her to retire before she’d turned 30, is pointing to the 2015 World Cup — and beyond.

“My body feels really good now, and we finally have been able to find a combination of the medicines that I needed,” said Boxx, 35. “I can’t tell you the last time I’ve had a major flare-up. And so I want to continue to play as long as I can.”

That leaves Wambach, among the first of Boxx’s teammates to learn of her condition, slightly awed.

“What she goes through on a daily basis is phenomenal,” said Wambach, who last week made a special plea on behalf of the Lupus Foundation to her 221,000 Twitter followers. “It’s hard enough if you’re healthy. It’s a grueling job. You wouldn’t know it from her.”

Before Saturday’s walk, Boxx spoke to the crowd. But during the walk she listened, as when Hakim Braud and Laura Sugano of Altadena approached to talk about their son, who has been battling an aggressive strain of lupus for 16 years.

“It feels good to know that you’re not alone,” Boxx said. “This walk is all about the unity of the community.”

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And they don’t give medals for that.

kevin.baxter@latimes.com

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