What is cystic fibrosis (CF) and how is it treated? More importantly ... where can you turn for help when your child is diagnosed?
Melissa Turner was four months pregnant when doctors discovered that she was a carrier for the gene responsible for Cystic Fibrosis (CF). After learning that her husband was also a carrier, they were told their child had a 25 percent chance of having CF. “When our son was born, he didn’t show the classic CF symptoms,” says Turner. “He was thriving and doing great.” But at 4 months old, a test determined that their son did indeed have CF.
What is CF?
People with CF endure mucus build up in organs like the lungs, where it can clog airways, and contribute to potentially life-threatening infections. The mucus can develop in other organs, like the pancreas, making it difficult for patients to absorb nutrients from food. Symptoms include cough, sometimes with phlegm, shortness of breath, salty-tasting skin, frequent bouts of bronchitis or pneumonia, poor growth and weight gain, and constipation. According to the Cystic Fibrosis Foundation (cff.org/cincinnati), approximately 1,000 new cases are diagnosed each year, with about 30,000 people in the U.S. currently living with CF.
Because CF can vary in severity from case to case, treatment is individualized. Therapies include everything from antibiotics and inhaled medicine, to what is known as “airway clearance,” involving loosening the mucus through the use of a vibrating chest vest.
Treatments & Support
The Turners were referred to Cincinnati Children’s Hospital Medical Center (CCHMC), where they spent several days learning about CF, its treatments and medications, and how to care for their child.
“Children with CF have to work hard to stay healthy,” says Turner. “Their daily care and treatments can take a lot of time.” She adds that the couple’s extended family rallied to learn about CF care, which varies “from respiratory therapy, taking pancreatic enzymes with each meal and snack, counting calories, and following a high-fat, high-calorie diet, along with taking other medications every day.”
Parents of children with CF can also find plenty of support from the local Cystic Fibrosis Foundation (cff.org/cincinnati). The foundation coordinates events and maintains a Patient Assistance Resource Center, a one-stop shop for information about living with CF, including help in managing insurance and applications.
“We help people find resources to afford the cost of their treatments, help navigate insurance options and coverage and navigate the social security application process,” says Alison Bethel, executive director of the CFF’s Greater Cincinnati Chapter.
Research supported by the CFF is paying off with drugs and therapies that have improved the quality and doubled the life expectancy of a child with CF.
“People look at our son and have no idea he has CF,” says Turner. “He is an active 10-year-old boy who enjoys playing baseball, basketball and hanging out with his friends … The future is an optimistic one, but until a cure is found, we must focus on keeping our children as well as possible to maximize both the quality and length of their lives. We have to believe that one day CF will stand for ‘Cure Found!’”
For more information about Cystic Fibrosis and how you can support families living with the disease, visit the Greater Cincinnati Chapter of the Cystic Fibrosis Foundation at cff.org/cincinnati.