Cystic Fibrosis Program
CHKD’s cystic fibrosis program provides integrated, multidisciplinary care for children and adults with cystic fibrosis (CF) and their families, including promoting normal growth and development, slowing the progression of cystic fibrosis disease and preventing, as well as treating, complications.
Our program is accredited by the Cystic Fibrosis Foundation for clinical care and research. We address the physical and emotional needs of the entire family and encourage parents to be active partners in managing their child's health.
We care for children and adults with confirmed diagnosis of cystic fibrosis and babies with a positive newborn screening of cystic fibrosis.
Our CF Center brings together experienced pediatric practitioners in the pulmonary and infectious disease specialties, as well as nutritionists, respiratory therapists, social workers and nurses. We tailor each child’s treatment plan according to his or her specific needs.
About Cystic Fibrosis
CF is a genetically inherited disease of the secretory glands that primarily affects the lungs, digestive system and pancreas of about 30,000 children and adults in the United States. CF is caused by a mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. Normally this gene makes a protein that aids the regulated transport of salt and water in and out of human cells. In contrast, the CF gene produces thick, sticky secretions (mucus) in the respiratory and digestive tracts, as well as in the reproductive system. Also, this process causes a measurable increase in salt excreted in sweat.
Accumulation of mucus can build up in the lungs of individuals with CF. This buildup makes it easy for bacteria to grow and can lead to recurring lung infections. This thick, sticky mucus can also block ducts in the pancreas. As a result, digestive enzymes produced by the pancreas cannot reach the small intestine. These enzymes normally help in the process of digestion. Without these enzymes, the intestines cannot adequately absorb fats and proteins.
Our pediatric physicians are board-certified in both general pediatrics and pulmonology or infectious diseases. Our consultants are board-certified in their respective specialties and have a dedicated interest in the treatment of patients with CF. Our physician for adult patients is board-certified in critical care, pulmonary and sleep medicine. They are assisted by nursing staff and various technical and office personnel, all of whom are trained to care for the special needs of children.
Clinic Times and Location
- Families: We see families at the CHKD main hospital site in a clinic dedicated solely to CF care. Clinics are Tuesday and Friday mornings for pediatric patients.
- Adults: Adults are seen Friday afternoons at the CHKD main hospital site.
- B. Capacia Patients: Patients positive for B. Capacia are seen at other times at the CHKD main hospital site.
Online Support Communities
CHKD offers educational services through the hospital school program -- a state operated program that has teachers and educational consultants who provide year-round educational services for patients, ages 2 through 21. They work with physicians, nurses and local schools to help children with chronic illnesses continue their studies. The program offers a continuum of services that cover inpatient status and outpatient clinics. To learn more, click here. If you're a teacher, click here.
CF Parent Advisory Group
The Cystic Fibrosis (CF) Advisory Group is a committee of parents and adult CF patients that provide feedback to the CHKD CF Center. The group works with the CF team to advance the practice of CF care and to improve the quality of care for patients.
The group’s prime objective is to enhance and optimize the medical care and quality of life for people diagnosed with cystic fibrosis. In doing so, its members promote an open learning environment, improved communication between patients and providers and personal empowerment.
The group's members, all parents of children with CF or adults with CF, share insights and information about their experiences, successes and failures.
Goals of Cystic Fibrosis Advisory Group
- Empower individuals with cystic fibrosis and their families
- Open communication and active participation by patients and families in the provision of health care
- Continually improve the quality of care
- Support ongoing research
- Confront cystic fibrosis with optimism, love, compassion and solidarity
Insurance and Referral Information
Make sure your referral has not expired. (Many are good for only 30 days, so check yours before you come to your appointment.) If your referral has expired, call your primary care physician and explain your situation. In most cases, your primary care provider will write you a new or extended referral.
Bring the referral with you to the appointment. If you do not have a referral, or if the referral you have is expired, your HMO will not pay for your appointment.
We offer in-depth information about insurance in our billing and insurance section.