Cystic fibrosis is a complex, inherited disease that causes the body's glands to secrete mucus that is unusually thick and sticky. Cystic fibrosis leads to problems in the lungs and gastrointestinal tract, including frequent respiratory infections, improper digestion and impaired growth.
Cystic fibrosis affects about 30,000 people in the U.S. Although there is no cure, comprehensive care is available at accredited CF care centers, and research is being conducted to develop new treatments and to search for a cure.
The Cystic Fibrosis Foundation (CFF) was established in 1955 by a group of parents of children with CF whose mission was to improve the quality of life for those with CF and to develop treatments and a cure.
The CFF promotes state-of-the-art specialized care by supporting and accrediting more than 100 care centers nationwide. Clinical trials and new drug discovery are conducted efficiently through the creation of CFF Therapeutics (a non-profit drug discovery and development affiliate) and the CFF Therapeutics Development Network (a centralized network of accredited CF centers that allows clinical trials to be streamlined).
Importantly, the CF Foundation network of accredited care centers gives caregivers and patients access to new and relevant information. The Cystic Fibrosis Foundation website is an excellent resource for patients and families who want to learn more about CF.
Our center-based care
The Cystic Fibrosis Center at Children's Memorial Hospital has been a CFF-accredited CF care center since 1963. It is the largest Cystic Fibrosis Center in the state of Illinois. The CF Center is committed to providing exemplary care to each patient and family focused on individualized preventive care, active management of lung health and nutrition, and patient and family education. We accomplish this through quarterly visits (or more) with the CF team, communication with our families, and educational programming including the CF Center Newsletter, Nutrition in Bite-Sized Pieces newsletter, and Connections, our multifamily educational and support program.
Multidisciplinary and coordinated CF care
The CF Center is staffed with a dedicated multidisciplinary team that consists of physicians (pulmonologists and a gastroenterologist), nurses, nutritionists, respiratory therapists, social worker, genetic counselor, exercise physiologist and pulmonary function specialists with expertise in CF care.
The core team (physician, nurse, nutritionist, respiratory therapist and social worker) is available at every regularly scheduled CF outpatient visit and by telephone.
The specialty services of a CF gastroenterologist, diabetes nurse specialists familiar with cystic fibrosis-related diabetes and a liver transplant nurse practitioner are also available during some outpatient visits to help coordinate and streamline care.
Other pediatric specialty services
For other medical needs, comprehensive pediatric specialty medical services are available and include ear, nose and throat specialists, gastroenterologists, allergists, pediatric surgeons, physical therapists, endocrinologists and hepatologists (liver specialists).
Children's Memorial has an active liver transplant program with leading experts in the Division of Gastroenterology, Hepatology and Nutrition.
Together, the comprehensive medical team is well equipped to serve children for any medical issue that may arise.