Aug. 13, 2014

Making a Difference

 

Toni Grimes joined the U.S. Army at 19 and worked hard for the next decade and a half to build a successful military career. But in 2006, she began having “some weird little symptoms.” A year later, she began experiencing shortness of breath. Fluid in her lungs tested positive for ANA (antinuclear antibodies) — a hallmark of lupus — and she was diagnosed in 2007.

Following chest surgery, Grimes was declared healthy enough to serve in Afghanistan. After three months, however, she began experiencing kidney failure. After a series of increasingly ­complicated setbacks, she was medically retired in 2011.

For many people, this would be the end of the story. For Grimes, 42, it was the beginning of a commitment to helping others. She moved home to Arizona, where she mentors veterans and is ­making a name for herself in the lupus community.

And she’s not alone.

Shine a Light

When Suzette Beamon, 31, an activity leader at AbilityFirst in Los Angeles, began having symptoms in 2002, she didn’t know much about lupus. Over the next decade, Beamon realized many people were in the dark about the disease and its effects. Then, in April 2013, she got inspired by the 15 100-foot-high illuminated pylons that light up Los Angeles International Airport (LAX). “I thought, ‘Hmm, I wonder if they could be lit in purple for Lupus Awareness Month in May?’ ”

She contacted Barbara Yamamoto, LAX’s customer service director, but says she was told the airport only works with organizations, and decisions are made months ahead of time. Undeterred, Beamon reached out to the Lupus Foundation of America, and on May 10, 2013, LAX glowed purple.

“I went down and took pictures and told everyone I knew,” says Beamon, who is determined to make the event an annual occurrence. “It was really exciting.”

Reach Out to Others

Sometimes actions can have ripples far beyond one small splash. Diagnosed in 1995, Patti Renfro says her lupus has never been under control, which limits her energy and activity level. This just made her more determined to make a difference.

Through a friend at church in Nashville, Tennessee, Renfro learned about a prison ministry program, and she soon found herself writing to several incarcerated women with lupus. When she moved to Knoxville following the death of her husband, Renfro began reaching out in earnest.

“The women had no clue what lupus was,” she says. Renfro began collecting resources to send to the prisons, and fielding letters from more women and their families. She reached out to the Foundation, arranging for lupus information and Lupus Now magazines to be sent to prisons throughout Tennessee—and she hopes they’ll be sent elsewhere, too. “If I wasn’t able to do this work, I don’t think I would have a purpose,” she says.

Get Things Moving

Organizing a lupus awareness event takes advocacy to a whole new level. Maureen Faille, 45, says this experience is what keeps her going.

Diagnosed with lupus following a major stroke, Faille was told she would never speak or walk again. “I was frustrated that people I had just met were giving up on me,” she says. Determined to recover, she tied her foot to a stationary bicycle, and “would pedal for hours and hours.” After months of therapy and surgery, Faille showed up at her doctor’s office in high heels. “He told me there was no possible way I was walking in those shoes,” she says, “but that was the beginning.”

Three years ago, she was invited to start a lupus walk event near her home in Bartlett, Illinois. “When I went to the township, they said, ‘Of course we’ll help you!’ And the next thing I knew, everyone in the community pulled through.”

She adds, “For me, it’s about raising awareness. I would go through everything that I went through all over again, to meet the people whom I’ve met.”

For Cynthia Edwards, 37, cycling to raise awareness of lupus is an opportunity to combine her philanthropic activity, professional skills, and determination to spread the word about wellness. “I knew at a very young age that I wanted to reach a lot of people,” she says. Diagnosed with lupus at 19, Edwards became certified in yoga, massage, nutrition, and herbalism and, at 21, started a company focused on health and wellness.

Edwards also offers business development consulting. That’s where she met Jeff Fleck and A.J. Stapleton, who were separately involved in providing bicycles to underprivileged children. With Edwards’ introduction, they joined forces to create Project ReCycle, now one of Colorado’s largest bike nonprofits that gives away 2,500 refurbished bicycles every year, along with a helmet, lock, and light.

As chairperson of Project ReCycle, Edwards often rides to raise money for causes close to her heart. “I am out here riding on behalf of people with lupus, women I’ve grown really close to.” Project ReCycle’s major sponsor, Trek Bicycle, recently remodeled her bike with purple accents for lupus awareness, she says, but the support goes beyond the tangible.

“Sometimes I feel like I want to quit because I’m weak that day, or I’m feeling tired,” Edwards says, “but to look around and see the Project ReCycle team riding with me, supporting our cause, is just amazing.”

Work From the Ground Up

Many aspects of raising awareness came together for Lisa Lynn Eveleth, 44, after her frightening diagnosis nearly two decades ago. As she quickly discovered, there was very little information available about lupus, particularly for young women. “I felt alone,” she says. “No one I knew had it, and it was a pretty dark time.”

After being hospitalized with central nervous system and kidney complications, and dropping to 72 pounds, Eveleth wanted to learn as much as she could about her new life with lupus. She remembers looking for resources, determined to get a better understanding of her body. But “the books I found told me I had five years to live,” she says. “It was very scary.”

Now a personal trainer, professional showgirl, and fitness competitor in Le Claire, Iowa, Eveleth started a nonprofit, LIVEFIT WITH LUPUS, in 2013, to help others like her. “When I first started doing the fitness competitions, I kept quiet about my lupus, because I didn’t want people to know,” Eveleth says. “But now I’ve really changed that mind-set.”

From its humble beginnings, LIVEFIT WITH LUPUS has evolved to sponsor an annual run and health expo for lupus awareness, including a 1-mile fun run, a 5K, and a half-marathon. “The best part is the feedback,” she says. “It’s important to me to be out there, doing what I can. I want people to feel the support and the hope that I didn’t feel at the beginning.”

Build Community

For Toni Grimes, the complicated journey toward diagnosis and treatment ultimately inspired her to reach out to others. Today, she serves as a representative for the Lupus Foundation of America in Phoenix, getting involved in advocacy and awareness work and chairing the Foundation’s local Walk to End Lupus Now® event, which attracted more than 600 people last year.

“It is really challenging, but it is great,” says Grimes of her work to raise lupus awareness. “It has given me a different outlook on life, a reminder that life is precious.”

Awareness 101

You don’t have to be Superwoman to make a difference for lupus advocacy. Our “pros” offer some real-life advice for raising awareness from the ground up.

  • It’s OK to start small. There’s no rule that says every action must be huge. Patti Renfro spends much of her time in bed due to lupus complications. “I don’t get out very much—I can’t,” she says. “But when I do, you better believe I’m talking about lupus or at my computer checking for emails from the women I correspond with.”
  • It never hurts to ask. Sometimes it’s enough to have a great idea, especially if you delegate. “We’re already doing so much on our own when we have an illness,” says Cynthia Edwards. “It’s important to cultivate allies to help us reach our goals.” Maureen Faille agrees. “You may think that a project is too big, but with the right people, there’s nothing you can’t do.”
  • Follow your passion. Finding a way to help raise awareness can become its own reward, one that energizes you on days you feel low. “A diagnosis can create a calling for you, because it makes you aware of who you are and where you want to go,” says Edwards.
  • Give yourself a break. While the urge to do everything can be strong, says Lisa Lynn Eveleth, “it’s easy to overdo it.” Staying mindful of your health and limitations aren’t signs of weakness. “Having people around who can really help get things done ensures that you’ll be successful even when you need to take a break.”

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