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Newborn Screening Will Improve Lives for Patients With Cystic Fibrosis 

For Kelly Wever, 23, every day is a fight against Cystic Fibrosis, but with family support and her own positive determination, she has been a champion from the very beginning.

Cystic Fibrosis is a recessive genetic disorder that affects the lungs and digestive systems of about 30,000 children and adults nationwide, and one out of every 4,000 births in Missouri, according to the State of Missouri Department of Health and Senior Services. This June, Missouri took an important step toward treating the condition by adding Cystic Fibrosis to the state’s newborn screening program.

Although there is no cure for CF, newborns identified by screening will benefit from early diagnosis and treatment. Diagnosis at birth should result in improved growth and lung function, a reduction in hospital stays, and a longer, more healthy life, said Judy Brusatti, pulmonary nurse at SSM Cardinal Glennon Children’s Medical Center.

“If we know about CF at birth, our hope is that we can prevent hospitalizations with medications, diet, and therapy at home,” Brusatti said. “Proper nutrition will lead to improved height, weight and cognitive function for babies.”

Currently, 50 percent of children with CF are diagnosed by the age of 6 months, and 80 percent before the age of 3. Patients with the condition develop thick, sticky mucus that clogs the lung passages and potentially leads to progressive lung deterioration. A deficiency of natural digestive enzymes prevents the breaking down and absorption of food and nutrients.

Treatment includes daily chest physiotherapy to clear the airways, replacement pancreatic enzymes, and antibiotics for chest infections.

“Every single day I have to do my treatments in order to stay alive,” Wever said. “I think that’s what makes CF a hard disease to fight, because you have to stay on it every single day. You can’t take a day or a week vacation, and you have to stay positive.”

Wever is a role model for others living with Cystic Fibrosis, and she recently received the “Heroes of Hope Living With CF” national award for her diligence in self care, and her positive accomplishments in school and life.

“In spite of her rigorous routine, if any of our patients have ever had that essential ‘spark,’ it is Kelly,” said Tony Rejent, MD, director of t he Cystic Fibrosis Center at Cardinal Glennon. “She has been in the hospital on a regular basis for what we designate ‘tune ups,’ but Kelly has changed that name to ‘parties.’”

These “parties” include lots of family members, movies, and popcorn to pass the time Wever is in the hospital. Recently she even enlisted several resident physicians to help her tie ribbons on more than 300 wedding invitations.

“Kelly has what most people would consider a pretty high burden of treatment,” said Mary Kay Brasken, a Cystic Fibrosis social worker at Cardinal Glennon. “In spite of that, she’s going to grad school, has a wonderful life, and is taking care of other people by volunteering.”

Currently, Wever is working on her masters in social work at the University of Missouri-St. Louis, and she aspires to work with senior citizens when she graduates. Wever said the support of her family and her husband, Nathan, has helped her to stay strong in her daily fight with CF.

“I think because of CF, I really see the important things in life,” Wever said. “Instead of focusing on what I don’t have, I value what I do have, and all the great things that are in my life.”

To learn more about Cystic Fibrosis, visit the CF Foundation’s Web site at www.cff.org.

 

 

Dr. Bob Wilmott is Chief of Pediatrics at SSM Cardinal Glennon Children’s Medical Center and is a Professor of Pediatric Medicine at Saint Louis University School of Medicine. If you have a child health question for Dr. Wilmott, go to the “Ask Dr. Bob” section of the Cardinal Glennon Web site at www.cardinalglennon.com.

 

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