Cystic fibrosis is a genetic disease that causes the body to make thick, sticky mucus. This is because of the faulty movement of sodium and chloride (the ingredients of salt) in the cells of certain organs, such as the lungs and pancreas.
Symptoms of CF include:
- Salty-tasting skin
- Coughing, wheezing and recurrent lung infections
- Good appetite but poor weight gain
- Bulky bowel movements.
In the lungs, this mucus leads to chronic infections and increasing loss of lung function. In the pancreas, the thick mucus keeps enzymes from reaching the gut to digest food. The disease also affects the ability of most men with CF to have children.
There are about 30,000 children and adults with CF in the United States. Because of
improved medical treatments, the median life expectancy for a person with CF is in the late 30s. And, children diagnosed with CF today may live much longer. Now, more than one third of people with CF are adults of all ages. The outlook for people with CF is improving; however, there is no cure.
Our center-based care
The Cystic Fibrosis Center at this hospital has been a Cystic Fibrosis Foundation-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.
Please read the details of some highlights of our care in the Cystic Fibrosis Center's Report for 2010.
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).
We also have 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.