Woman fighting cystic fibrosis one step at a time

Published 12:00 am Saturday, September 17, 2005

Amanda Duncan was 24 years old before the respiratory, immune and digestive problems she’d had all her life finally made sense.

That was the year that, on a guess, a local doctor finally tested her for &045; and in short order, diagnosed her with &045; a disease called cystic fibrosis, in which a body’s mucus becomes so thick it chokes off the respiratory, immune, digestive and other body systems.

It was a diagnosis that left her feeling her life had ended, and for a year she waited to die.

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But now, Duncan has decided she’s ready to hit the streets to fight this disease &045; one step at a time.

Duncan was first admitted to the hospital with pneumonia when she was 2 months old. For more than two decades, she would also be diagnosed with asthma and severe allergies &045; so severe that the mucus she would cough up for minutes on end every morning would be almost too thick to get up, and coughing fits became commonplace.

Given her history of such problems, more severe complications she suffered more recently could easily be explained away.

For example, when Duncan was pregnant with her second child and visiting her then-husband in the military in California, she began coughing up blood.

Alarmed, she consulted her mother-in-law, a nurse, who told her she probably burst a blood vessel by coughing so hard.

Then when Bralee, the same baby boy she carried, was 6 years old, he found his mother in bed, too sick and weak to get out of bed to care for him. He called Duncan’s mother, who rushed there as soon as possible to take her to Natchez Community Hospital. There, Duncan was so weak she had to be carried into the emergency room.

For weeks, Duncan was kept in a room reserved for patients with severe respiratory problems. She was told she probably had tuberculosis &045; but that didn’t make sense, she reasoned because, as a military wife, she had been tested for TB so frequently.

Then two University of Mississippi Medical Center nurses who were working for a few months at Community and had cystic fibrosis experience saw her charts, each separately from the other. They knew what they were looking at and each came, just a few days apart, to tell Duncan she must be tested.

The test for cystic fibrosis is simple &045; taking a sample of sweat to determine how much salt it contains. If someone tests over a certain threshold, CF is certain.

Doctors told her she couldn’t have CF, because about 90 percent of cases are detected before a person reaches age 18. But, Duncan was tested by Dr. Barry Tillman and when he wouldn’t tell her the diagnosis over the phone, she knew the answer.

Treatments began as soon as possible, and one change was evident almost immediately. Once she started taking enzymes to help her better digest and absorb the nutrients from her food, &uot;I gained 25 pounds in two months,&uot; she said proudly.

For a year Duncan was, in her own words, &uot;waiting to die.&uot;

She knew surviving CF was a matter of keeping good care of one’s body, keeping lung function as healthy as possible for as long as possible.

To this day, twice a day, she uses breathing treatments and a vest that uses percussion to beat the mucus from her lungs.

But gradually, Duncan came to a conclusion.

She would have CF anyway &045; there’s not yet a cure.

But she could spend her life waiting to die or doing all she could to fight the disease.

She chose the latter.

That turning point came recently, but Duncan has already sprung into action on three fronts.

First, she has used the Internet and information from the Cystic Fibrosis Foundation to study up on the disease, the latest research and treatments and statistics, becoming a walking encyclopedia about the disease.

Second, she uses her knowledge to educate others about the disease and to encourage them to test their children or themselves at the first sign of the health problems that plagued her. Seeing a history of such health problems in one’s family tree &045; which she did, in retrospect, after she was diagnosed &045; is another indicator one should be tested.

And third, she organized a team of family and friends to take part in the recent Great Strides walk, an annual event held in Alexandria &045; and throughout Mississippi, Louisiana and the nation &045; to help fund research to find new treatments and a cure. She also sent letters to nearly everyone she knew to tell them about CF and encourage them to give to the CF Foundation.

Next, Duncan wants to organize a Great Strides walk in the Miss-Lou. Speaking of it, she speaks with passion in her voice and a smile on her face, the type of passion displayed by someone who’s determined to fight

and win.

Adding to that determination is the fact that her three children are carriers of the disease. (The disease happens when two people who carry the recessive gene have children, making it necessary for a carrier to have genetic testing for his or her partner before having children.)

&uot;I want there to be a cure,&uot; Duncan said. &uot;For my

children. And my grandchildren.&uot;