Cystic Fibrosis Care Center
Nationally ranked by U.S. News & World Report
The Children’s Mercy Cystic Fibrosis Care Center Team provides expert, family-centered care to infants, children and adolescents living with cystic fibrosis. Our care team includes medical providers, nurses, respiratory therapists, social workers, dietitians and pharmacists who all work together to coordinate care for your child.
The Cystic Fibrosis (CF) Care Center is fully accredited by the Cystic Fibrosis Foundation. More than 260 families from across the Midwest come to Children’s Mercy each year to receive specialized care for their child.
From diagnosing your baby to helping your young adult transition to managing their own care, the Children’s Mercy CF team will be with you every step of the way.
Understanding Cystic Fibrosis
Cystic fibrosis (CF) is a genetic disease that causes frequent lung infections. Over time, the disease becomes progressively worse and makes it difficult to breathe.
The genetic mutations in people with CF cause a protein called CFTR to stop working correctly. Because of this, cells in the body can’t remove the chloride from the cells correctly, which causes thickening of the mucus in the lungs, pancreas, liver, and other organs.
This thick, sticky mucus causes a number of health issues, including frequent infections, growth problems, liver disease, and fertility concerns.
Symptoms of cystic fibrosis
People with CF can have a variety of symptoms, including:
- Extremely salty-tasting skin
- Coughing and excessive phlegm
- Frequent lung infections such as pneumonia or bronchitis
- Difficulty breathing, including shortness of breath and wheezing
- Slow growth and trouble gaining weight, even if well-nourished
- Trouble with bowel movements, often characterized by frequent greasy, bulky stools
Find out more about cystic fibrosis
To help you better understand cystic fibrosis, including symptoms, treatments and support for people living with CF, we recommend that you explore the Cystic Fibrosis Foundation's website.
Treatment options for cystic fibrosis
Advances in research and treatments for cystic fibrosis have significantly improved the outlook for people with CF and related conditions. Babies with CF grow, develop, and do what other babies do. Children with CF go to school, play sports, and get their driver's licenses. Adults with CF can go to college, pursue successful careers, and have families of their own.
Today, because of improved medical treatments and care, more than half of people with CF are age 18 or older. Many people with CF can expect to live healthy, fulfilling lives into their 30s, 40s, and beyond.
Your Children’s Mercy care team will create an individualized treatment plan specific to your child’s needs.
Read about the latest treatment options for CF.
What to expect at your appointment
Choosing the right care team for your child is a big decision, and families often wonder what a clinic visit will look like. Find out more about appointments and testing at the Children's Mercy Cystic Fibrosis Care Center so you'll know what to expect before you come.
Research - finding a path to a cure for cystic fibrosis
The Children’s Mercy Research Institute demonstrates the commitment to ongoing research and innovation at Children’s Mercy. The CF team has several members who regularly participate in research studies aimed at developing new medications and therapies for people living with CF.
On average, one out of every four families in our clinic participates in a research study, which is an excellent participation level. In 2018, we were recognized as the second-highest enrolling CF center in the country.
Is my child a good candidate for a research study?
The CF care team at Children’s Mercy meets weekly to review clinical trial eligibility and potential research study candidates. We know what an impact our patients and families have in the development of new CF therapies and are here to help find the right clinical trial for your child. If you are interested in taking part in research, talk to your CF care team.
More information about current clinical trials is available on the National Institute of Health’s research study database and the Cystic Fibrosis Foundation’s clinical trial finder.
Cystic fibrosis: Amber’s story
At 35, Amber Dawkins has been fighting a formidable foe her entire life—cystic fibrosis. As a child, the Children’s Mercy CF Care Center helped keep her healthy. Now 35 years old, Amber is determined nothing will stop her from living her life to the fullest, not even CF. Read how she’s beating the odds, competing on one of the world’s biggest stages in the athletic competition, "American Ninja Warrior"!
Cystic fibrosis and research: Myah’s story
Meet Myah, a teen who loves playing soccer and also happens to have cystic fibrosis. Recent clinical trials have helped Myah keep up with her teammates and improve her quality of life through access to new medication and treatment options.
Family support
The Cystic Fibrosis Patient Family Advisory Council works in partnership with the CF Clinic to advocate on behalf of children and families for the best quality care. The council serves as a resource for parents to further influence policies and procedures, enhance communication, and expand education for children and families in both inpatient and outpatient settings.
The PFAC is made up of a motivated group of parents and caregivers focused on sharing their perspective and firsthand knowledge in collaboration with the CF care team.
Cystic Fibrosis Foundation
Many of our families have found incredible support through the Cystic Fibrosis Foundation. The organization helps families understand the condition, navigate the challenges of daily life with CF, and access detailed information about treatment and therapies.