CAMC’s Cystic Fibrosis Center is a fully accredited center providing a multidisciplinary team approach to caring for patients with cystic fibrosis (CF). The team is comprised of three physicians, a registered nurse, respiratory therapist, registered dietician, social worker and a nurse coordinator.
Newborn screening for CF began in West Virginia in March 2008. Older patients suspected to have CF can be diagnosed easily by commercially available tests. Patients diagnosed with or suspected to have CF can be referred to the center to establish the diagnosis and be provided with the needed comprehensive care by the
team, which works closely with the patient’s primary care physician.
According to the Cystic Fibrosis Foundation, CF is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
• Clogs the lungs and leads to life-threatening lung infections; and
• Obstructs the pancreas and stops natural enzymes from helping the body breakdown and absorb food.
More than 10 million Americans are silent carriers of the defective CF gene and remain symptomless. About 25 percent of children born to parents carrying the CF gene are affected with the disease. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have
improved the quality and duration of life for children and adults with CF.
“At the center, we treat typical and atypical cystic fibrosis, providing the latest comprehensive treatment for pediatric and adult patients with CF,” said Raheel Khan, MD.
“As an accredited center, we work with individuals as well as other care centers, forming a national network to ensure that Center provides comprehensive care for cystic fibrosis patients people with CF everywhere are being treated using the most effective therapies and best practices,” said Becky Taylor Oxley, nurse coordinator.
The center is also actively involved with the Cystic Fibrosis Patient Registry, which tracks the health of people with CF in the United States. The information in the registry allows caregivers and researchers to identify new health trends, recognize the most effective treatments and design clinical trials for potential therapies.
The National Institutes of Health (NIH) has cited the CF care center network as a model of effective and efficient health care delivery. “The high quality of specialized care given throughout the care center network has led to the improved length and quality of life for people with CF,” Oxley said.
The center treats pediatric and adult patients, and patients are seen by each member of the care team during their
routine visits. Patients can be referred by their physicians or by the Cystic Fibrosis Foundation if they are moving from one center to another.
For more information about the center, call (304) 388-1552.