- Cystic Fibrosis
The Lehigh Valley Cystic Fibrosis Center is one of approximately 130 Cystic Fibrosis Foundation-accredited care centers in the United States – all of which share the same mission to provide leading-edge, multidisciplinary care to people with cystic fibrosis (CF). Our patients not only receive the most up-to-date care with the latest treatments, but they also have access to a team of multidisciplinary specialists who care for all the complications that can be caused by CF.
Led by board-certified pediatric pulmonologists, our team has the extra training required to treat the unique needs of infants, children and teens, and we work together to develop a care plan that’s specifically tailored to your child and family.
Approximately 1 in 3,500 babies in the U.S. is born with cystic fibrosis – a congenital and genetic disease that causes a buildup of mucous that can affect multiple organs in the body. Currently, there is no cure for CF, however, there are multiple therapies aimed at slowing the progression of the disease, and in certain instances, preventing specific medical complications. In fact, there have been many advances in the treatment of CF that have led to individuals now living well into adulthood.
What is a Cystic Fibrosis Center?
A Cystic Fibrosis Center is a medical center devoted to the care of individuals with CF and their families. CF Centers are only accredited by the Cystic Fibrosis Foundation (CFF) after undergoing a rigorous evaluation by the CFF.
Receiving care at a CF Center affords your child and your family access to a multidisciplinary group of health care experts who have received training in CF care. This team works closely to come up with a plan of care tailored for your child and your family. We also have access to the resources of the CFF including the latest treatments and research studies.
The Lehigh Valley CF Center is the only such CF Center based in the Lehigh Valley and the only pediatric CF Center to be an affiliate of the CF Center of the Children's Hospital of Philadelphia (CHOP). In addition to providing the most advanced care in the Lehigh Valley, this affiliation allows us to provide additional resources for patients and their families.
Specialized supportive care exclusively at Lehigh Valley Reilly Children’s Hospital
The CF program at Lehigh Valley Reilly Children’s Hospital offers a wide range of supportive services that are not always available at other treatment centers. As part of the program, patients meet with a nutritionist who regularly monitors their weight and overall nutritional needs. People with CF often have trouble maintaining a healthy weight, so the nutritionist keeps track of their condition to see if any additional medications should be considered. They also meet with a physical therapist who helps optimize their activity level, while a dedicated pharmacy team allows families to get their child’s specialty medications and equipment in one convenient location.
Parent Advisory Council
CF can be a very isolating disease. To help reduce that isolation, Lehigh Valley Health Network’s Parent Advisory Council offers newly diagnosed CF patients and their caregivers support from other families who are in a similar situation.