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Chowchilla woman wants to help find cure for rare lung disease

Peggy Haupt is one of 835 registered people in the United States living with a rare lung disease -- lymphangioleiomyomatosis.

"You think that's going to happen to someone else," she said. "That's the first thing that comes into your head -- that shouldn't happen to me."

So rare is the disease that as of 2009, just 1,237 people worldwide were registered with the LAM Foundation as suffering from it. The foundation's mission is to find effective treatments and a cure for the disease, according to its website.

Maybe that explains why, for the first nine months after being diagnosed, Haupt was in denial. But her attitude has changed, and now she's even raising money to help find a cure.

The 50-year-old Chowchilla resident was diagnosed with the condition, which is commonly known as LAM, in June 2008. "I had a strange sensation, funny breathing," she recalled. "It turns out I had a collapsed lung. That was my first symptom -- just out of the blue, a collapsed lung."

Haupt was first treated at Mercy Medical Center then transferred to a hospital in Modesto where her other lung collapsed. Her condition was later confirmed through a lung biopsy.

The progressive lung disease, which mostly affects women, is a type of muscle cell that grows in the lung tissue, according to the American Thoracic Society. The cells grow throughout the lungs and can block airways, preventing the lungs from providing oxygen to the rest of the body, according to the society.

"There is no real effective treatment," Haupt said. "There's no cure."

The treatment options include using supplemental oxygen tanks or undergoing a lung transplant, Haupt said, although such surgery isn't promising. "Even with a lung transplant the LAM cells can return on the new lungs, so it's not a cure," she explained.

Haupt's condition is considered to be at mild level, and she hasn't needed supplemental oxygen. She sees a pulmonary doctor every six months at Stanford Medical Center, one of the few LAM clinics. And every six months she undergoes a lung function test.

That her condition is mild doesn't provide much comfort because it can worsen any minute. "The rate of progression is unknown," she said. "It can change with every woman."

Haupt is ardent about helping find a cure, especially for younger women with the disease. Since becoming diagnosed, she's raised about $20,000 for the LAM Foundation for research to find a cure.

She also has started a Facebook page, which now has more than 250 members worldwide. Members are able to exchange ideas about resources and information about the condition.

On Saturday, she will raise money during the second annual Lyrics for LAM event her nephew organized. All proceeds from the music event will go to the foundation.

"I have become very passionate about this to see young women find a cure in their lifetime. Of course, I want it in my lifetime too," she said. "I've raised my kids and I'm content in dealing with this, but there are women in their early 20s getting this, my daughters' ages, and when I see that these women are tied up to oxygen tanks ... " her voiced trailed off.

"It's such an ugly disease that literally takes your breath away."

Reporter Yesenia Amaro can be reached at (209)385-2482, or yamaro@ mercedsun-star.com.

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