Advances in Cystic Fibrosis Look to Prevent Early Deaths

By Bernhard, Blythe | St Louis Post-Dispatch (MO), September 23, 2016 | Go to article overview

Advances in Cystic Fibrosis Look to Prevent Early Deaths


Bernhard, Blythe, St Louis Post-Dispatch (MO)


Cystic fibrosis has received international attention recently through the story of Dalton and Katie Prager, a young married couple fighting to see each other one last time.

Katie Prager died Thursday, five days after her husband. Both had cystic fibrosis and complications from lung transplants.

"We were given a great gift, we knew her time was short and she was able to do a few things that she wanted, and I am grateful for that," Katie Prager's mother, Debbie Donovan, wrote Thursday on the couple's Facebook page. "The days to follow will not be easy but I find comfort in knowing that my girl lived, she really lived."

Katie Prager, 26, was in hospice care at her home in Kentucky.

Dalton Prager, 25, died Saturday at Barnes-Jewish Hospital. He had returned to the St. Louis area for treatment to be closer to family.

The couple longed to see each other again before they died, but neither was healthy enough to travel.

Their story is tragic, but progress is being made in treatments.

Today there are more adults than children living with cystic fibrosis, a progressive lung disease that used to kill children before they reached adolescence.

Major advances in treating the disease started with the discovery of the cystic fibrosis gene in 1989. Though the median age of survival is still just 40, new drug therapies and research bring optimism that babies diagnosed with cystic fibrosis today could have close to normal life spans.

"We tell parents of newborns that our outlook is very positive," said Dr. Blakeslee Noyes, director of the cystic fibrosis center at Cardinal Glennon Children's Hospital. "I fully expect them to play sports, graduate high school, go to college, with no limitations."

Both Katie and Dalton received lung transplants within the last two years and developed complications including lymphoma.

They had aggressive forms of the disease in part because they shared a dangerous drug-resistant bacteria.

Children and adults with cystic fibrosis are discouraged from having close contact with each other because of the risk of infections. Cystic fibrosis summer camps and group activities no longer exist. The Pragers knew the risks but decided having time together was worth the chance of dying younger.

About 1 in 3,000 to 3,500 babies are born with cystic fibrosis. Most commonly occurring in Caucasians, the disease is inherited when both parents are carriers of a defective gene. Each of their children has a 1 in 4 chance of developing cystic fibrosis, while other children may become carriers. …

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