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Living With Cystic Fibrosis
   posted 3:47 pm Sat July 12, 2008 - Little Rock
   reporter: Amanda Manatt      posted by: Robin Skiles
Channel 7 News - Living With Cystic Fibrosis
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There are approximately 30,000 Americans living with Cystic Fibrosis, a hereditary disease often called CF.

It was once thought to be a death sentence, but most patients now live well into adulthood, many leading normal, productive lives.

John and Jordan Miller appear to be the picture of good health. Watching family time during a visit home from college, you'd never guess both young adults are battling a chronic disease, Cystic Fibrosis, or CF.

After years of respiratory problems, John was tested for CF at the young age of 17. This took place when his mom noticed something strange after a track meet.

(Julie Miller, mother) "I felt on his arm and he was crusty with salt. I knew CF patients would produce a lot of salt when they sweat."

John was diagnosed, then 14-year-old Jordan was diagnosed two months later.

(Julie Miller) "It was very devastating. It was one of the most devastating things I've ever been faced with. Just the adjustment, and how would we cope?"

The Millers, then living in Memphis, came to UAMS, where Doctor Paula Anderson runs the only adult CF program in the state.

(Dr. Paula Anderson, UAMS) "I have patients ranging in age I would say from 19 to 64."

Anderson says treatment has evolved over the years, helping patients live longer.

(Dr. Anderson) "In the 1950s, if a child or infant is diagnosed with CF, they often didn't live out of their childhood."

The median age of survival currently is 37, and as the Millers show, life can be normal.

(John Miller) "I go running. I play guitar, hang out with friends, watch TV, work part time waiting tables..."

However, there are setbacks. The disease affects the digestive system and lungs.

(Dr. Anderson) "There's really thick secretions in the lungs that are hard to clear, so there's a cycle of infections that eventually do damage to the lungs."

To prevent that, Jordan wears this vest at least once a day, taking frequent breathing treatments. John's had fewer infections, but closely monitors his health, too.

(Dr. Anderson) "We all think it's a challenge to exercise a few times a week and a person with CF really has a much bigger challenge to work in their treatments."

(Jordan Miller, CF Patient) "I'm just used to it now. It's just part of the day to day."

Through it all, John and Jordan not only survive, they thrive.

(Jordan) "I plan on living a normal life, on graduating, getting a job, a family. I just hope there are future treatments that will enhance my life a little bit and make it easier for me. I pray for the best."

Doctors say they are on the edge of finding a cure for CF.


 


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