Welcome to the Lehigh Valley Cystic Fibrosis Center. We are one of approximately 110 such centers in the United States.
“Our mission is to provide health care for individuals (newborn to young adult) with the diagnosis of cystic fibrosis (CF),” says Robert Miller, MD, a pediatric pulmonologist with Lehigh Valley Health Network. “Our focus is providing that care in a partnership with the child diagnosed with CF, the family, the primary care practitioner and our multidisciplinary healthcare team in a compassionate and caring manner.”
CF is a genetic disease that causes a buildup of mucous which can affect multiple organs in the body. CF is not contagious. You are born with it. Approximately 1 in 3,500 babies born in the USA have CF. There are approximately 30,000 people in the USA with CF.
“While there is no cure for CF, there are multiple therapies aimed at slowing the progression of the disease and in certain instances preventing specific medical complications.” Miller says. “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 people with CF and their families. CF Centers are only accredited by the Cystic Fibrosis Foundation (CFF) after undergoing a rigorous evaluation by the CFF.
The Lehigh Valley Cystic Fibrosis Center is the only such CF Center primarily based in the Lehigh Valley. We are fortunate to be an affiliate of the CF Center of the Children's Hospital of Philadelphia (CHOP). This affiliation allows us to provide care in the Lehigh Valley and also have access to the additional resources of CHOP. We are the only pediatric CF Center to have this affiliation with CHOP.
Receiving care at a CF Center affords your child and your family access to a multidisciplinary group of healthcare experts who have received training in CF Care. This team works closely together 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.
Dealing with cystic fibrosis
"Our goal is to always help all of you in dealing with this disease," Miller says. "We strongly believe that our mission is to help you with whatever resources are needed and to do so in a compassionate manner.
"You and your family are not alone. There are also many parents who are very willing to share their experiences with you. There is an active family support group run by the parents. We also will meet with your child or siblings or you to simply sit down and talk. Please let us know how we can help."