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Kingsland woman with rare lung disease finds courage

Randy & Leah Edwards (Photo provided by UAMS)

In February 2017, Leah Edwards, 29, came down with pneumonia and wasn’t getting better. By April, she was vomiting and struggling for air.

“My mind was racing 100 miles an hour,” her husband Randy said. “I knew something was really wrong, that it was more than a regular sickness. I wanted the best care I could get for her.”

Edwards drove his wife 70 miles from Kingsland to UAMS. She was admitted right away.

“She has pulmonary alveolar proteinosis,” said Nikhil Meena, M.D., an interventional pulmonologist at UAMS.

That means her body is no longer able to clear out a buildup of a substance the lung ordinarily needs to keep its air sacs open for breathing. That substance is surfactant, a fluid secreted by the lung’s air sacs. Its purpose is to keep the air sacs from collapsing. But in someone with pulmonary alveolar proteinosis, or PAP, the fluid builds up and causes shortness of breath.

PAP is a rare disease, present in less than 10,000 people in the country.

“When I found that out,” Leah Edwards said, “I felt like my life just stopped right there. I’m in my late 20s, healthy and active. Now I’m learning I have to be on oxygen for the rest of my life. This isn’t supposed to happen. It was very hard to take.”

Edwards now has to come in for treatment every three months to have her lungs cleared of the surfactant. Meena says the treatment consists of putting the patient on a breathing machine and using saline to wash all of the surfactant out. So far, she’s had two cleanings, one for each lung.

“Many patients don’t need treatment after three or four years,” Meena said. “Their bodies began to once again start clearing the surfactant on its own. We’ll have to monitor to see if that is the case for Leah.”

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