Cystic Fibrosis Care at Lurie Children's CF Center
The Cystic Fibrosis Center at Lurie Children’s has been a Cystic Fibrosis Foundation-accredited cystic fibrosis (CF) care center since 1963. It is the largest cystic fibrosis center in the state of Illinois.
The CF Center is committed to providing excellent, multidisciplinary care to each patient and family; staff members focus on individualized preventive care; active management of lung health and nutrition; and patient and family education.
The Cystic Fibrosis (CF) Center at Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University provides comprehensive proactive care throughout a CF patient’s lifetime. Care decisions are made collaboratively between the patient, family and health care team and are based on the best information available. We continuously assess our practice to provide optimal care and offer access to research, including development and testing of new treatments. Through these strategies we aim to improve the quality and length of life for all individuals affected by CF.
The Cystic Fibrosis (CF) Center at Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University will continue to provide the highest quality clinical care and research. We will strive toward excellence and growth through collaboration within the CF community. We will pursue our goals while ensuring continued distinction in clinical care, quality and research.
Our CF Center physicians are board-certified in pediatric pulmonary medicine and have received training in cystic fibrosis care. They coordinate the outpatient care of children with the CF team and rotate weeks supervising (or directing) the care of patients that are hospitalized. Our physicians are actively involved in clinical research. There is always a pulmonary physician on call, 24 hours a day, seven days a week.
Our experienced pulmonary nurses are available to coordinate your many CF care-related needs. This may include home routines, management of acute illnesses, obtaining and interpreting test results, providing medication information and prescription refills, negotiating adherence with your child, interfacing with school and home care needs. There is a nurse available at each regularly scheduled outpatient visit and by telephone Monday through Friday.
The purpose of providing respiratory care is to prevent a decline in lung function. Early treatment of the lungs may include the use of airway clearance techniques (ACT) that mobilize secretions, inhalation therapy to deliver medications to the lungs, early treatment of respiratory illnesses and the use of medications that have proven to be effective in CF. These form the foundation of respiratory care in cystic fibrosis.
Our experienced respiratory therapists teach patients and families airway clearance techniques tailored to individual needs and abilities. This may include chest physical therapy, Flutter®, acapella, the vest and autogenic drainage. The therapists also perform an ongoing assessment because ACT options may change as your child grows older.
Optimal CF nutrition helps keep lungs healthy and allows the body to fight infection. Our nutritionists play an active role in the care of our patients. Height, weight and body mass index are reviewed at very visit to assess growth. In addition, the nutritionists review enzymes, gastrointestinal patterns, vitamin supplementation, individual eating habits, mealtime behaviors and sports and school lunch schedules. They collaborate with the patient and family on nutrition strategies and problem solve around obstacles. Our two CF center nutritionists are also available for inpatient care, outpatient visits and interim phone calls. Practical assistance in meeting nutrition goals is provided during clinic visits, by nutrition newsletters and a variety of other resources.
All families experience stress when a member has a chronic illness. The CF team social worker is available to assist families in managing this stress by partnering with them to find solutions. The social worker is present at most clinics and is available during the week by phone to provide support, answer questions and make referrals. She also performs routine psycho-social assessments in order to assist the team in providing comprehensive care to the children and families who use our center.
Cystic fibrosis is an inherited disease whereby an individual inherits two abnormal CF genes, one from each parent. When an individual is known to have CF, it is possible that other family members could be affected by CF or be a carrier (someone who inherits one abnormal gene from just one parent). Genetic counseling is helpful in understanding how CF is inherited, what the chances are that another child born from the same parents could also have the disease (or be a carrier), what the recommendations are for CF carrier testing for spouses, and fertility options.
A genetic counselor meets with each new CF family and is also available for consultation during regularly scheduled outpatient visits. Please notify the CF Center if you wish to see the genetic counselor.
Children with cystic fibrosis inherit the disease from their parents. This happens when each parent has a copy of an altered CF gene. Today, there are ways to test parents to determine whether they are CF carriers. Infants are also screened for CF soon after birth. Learn more about the methods used for screening:
The Cystic Fibrosis Center at Lurie Children's participates in clinical research efforts to broaden the understanding of cystic fibrosis and help develop new therapies. Discovering and developing new and more effective treatments is critical in improving the health and life of individuals with cystic fibrosis.
Your support is vital in helping us continue to make a difference in the lives of patients and families. Lurie Children's relies on philanthropic funding to enhance its programs, services and research for children. To learn more, please e-mail the Ann & Robert H. Lurie Children’s Hospital of Chicago Foundation at firstname.lastname@example.org or call 312.227.7500.