Nicholas Thomas of Dayton spends 1 hour a day using a vibrating vest to loosen mucus in his lungs, and adheres to a regimen of 15 pills everyday. Taylor Bush from St. Paris takes 5 pills before each meal to help her digest her own food as she struggles to gain weight and gather her strength to fight off lung infections. And for Adrianna Scott of Xenia, multiple medications, daily breathing treatments and being extra cautious of catching even a minor respiratory infection are now part of her everyday routine. Teenagers living with cystic fibrosis (CF) have to deal with these kinds of obstacles everyday.
CF is a genetic disorder and a truly life-threatening condition that affects both lungs and the digestive system. Sixty years ago, these energetic and bright kids would probably have not have survived past elementary school, but thanks to the constant efforts from researchers and academics, cystic fibrosis management has come a long way. What’s missing now is a cure.
Thanks to research programs like the one being carried on at Dayton Children’s Hospital, remarkable steps towards CF therapies and treatments allow the 30,000 children fighting against CF in the nation to live longer and fuller lives. “Taylor has been in three different research studies. She knows it might eventually also help others with cystic fibrosis,” said her mother Kristina in a press release.
A new grant that the Cystic Fibrosis Foundation recently attributed to Dayton Children’s Hospital will support more research studies and consequentially more children will gain access to the latest advancements in CF treatment. The hospital will be able to hire a research coordinator and will be able to increase enrollment in studies.
“This is an exciting and hopeful time for patients with cystic fibrosis and their families. New therapies directed at the actual genetic defect causing cystic fibrosis have become available in the past few years, and more are in the pipeline. Clinical care at accredited Cystic Fibrosis Foundation treatment centers and research through the Therapeutics Development Network have been critical to improving the lives of people who have cystic fibrosis. I am proud to be a part of such an exciting organization,” said Gary Mueller the director of the Cystic Fibrosis Center.
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