Children with Cystic Fibrosis benefit from early intervention. The earlier a child is diagnosed and cared for by a Cystic Fibrosis Center, the better the child’s outcomes are. Cystic Fibrosis is a genetic disease that is caused by a ‘recessive’ gene. Recessive means that the child must receive two copies of the gene, one from each parent, for the gene to cause disease.
A Cystic Fibrosis carrier is a person with one working copy of the CF gene. Typically a carrier is healthy and does not have signs of CF.
When EACH parent has a WORKING copy of a CF gene and are carriers, then EACH pregnancy…
The Cystic Fibrosis Center is currently involved in research that is utilized to evaluate and enhance the treatment of the child with Cystic Fibrosis. We are involved in various studies and will communicate with patients as opportunities are available.
This multi-center, longitudinal follow-up study of patients with cystic fibrosis for monitoring pulmonary function, pulmonary exacerbations, and the safety of long-term treatments as patients are tracked over their lifetime and trends are then able to be identified due to the sheer volume of data that is entered and evaluated.
Find out more about how to join the patient registry, founded by the Cystic Fibrosis Foundation.
We have the best patients and patient families! It’s because of you that we do what we do.
See below for what some of our providers and patients are doing to overcome pulmonary issues and to get the word out about pediatric pulmonary diseases.
The Cystic Fibrosis Center of Prisma Health Children’s Hospital–Upstate has multiple subspecialists who work together to provide multidisciplinary care for pediatric Cystic Fibrosis patients. This interdisciplinary team is the heart of our center and meets to evaluate the clinical, educational and psychosocial needs of our families and their children.
Our primary team consists of pediatric pulmonologists, advanced practice nurses, respiratory therapists, dieticians, social workers and child life therapists. Additional expertise from pediatric gastroenterologists, endocrinologists, infectious disease specialists, genetic counselors, pharmacologists, and physical therapists are available.
Steven M. Snodgrass, MD
Director, Cystic Fibrosis Center, Children’s Hospital
Medical Director, Pediatric Pulmonology, Children’s Hospital
Michael J. Fields, MD, PhD
Medical Director, Pediatric Respiratory Care, Children’s Hospital
Assistant Director, Cystic Fibrosis Center, Children’s Hospital
Antine Stenbit MD, PhD, FCCP
Lisa A. DuBose, NP
Rebecca Peace, RRTE, RCP
Cystic Fibrosis Registry Coordinator
Kristan Brown, RD
Emily Rogers, RD, LD, CNSC
Dana Bird, BS, CCLS
Certified Child Life Specialist
Katie Ellis, PharmD, BCPPS
Christy Clarke, LMSW
Pauline Lloyd, RN