Cystic Fibrosis

About Cystic Fibrosis

Cystic fibrosis (CF) is a genetic disorder that affects the lungs, the pancreas and other organs. Close to 40,000 people in the U.S. have CF. Most individuals with CF are diagnosed before the age of two years, but in some cases the illness is so mild that it is not diagnosed until adulthood. Improvements in the treatment of CF have led to dramatic increases in lifespan and quality of life.

Cystic fibrosis is caused by mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. This gene is responsible for making the cystic fibrosis transmembrane conductance regulator (CFTR) protein. Individuals with one mutated gene are considered carriers and do not have CF. The inheritance of two mutated genes, one from each parent, results in CF. Abnormalities in this gene are most common in Caucasians but occur in all races and ethnicities.

The CFTR protein regulates the movement of chloride – a component of salt – across cell surfaces, and when mutations in the gene cause absence or dysfunction of this protein the mucus lining various organs becomes thick and sticky. Common problems related to this include chronic lung infections, maldigestion, diabetes, male infertility and recurrent pancreatitis. Common symptoms include persistent cough and cough with phlegm, shortness of breath, frequent greasy or oily stools with difficult bowel movements and chronic sinus infections. The exact symptoms and the severity of disease can vary widely between patients.

Why Choose Atrium for Cystic Fibrosis Care?

Atrium Health is a nationally accredited Cystic Fibrosis Center for children and adults as designated by the Cystic Fibrosis Foundation. The Adult CF Clinic at the Jan & Ed Brown Center for Pulmonary Medicine is committed to improving the lives of patients (and their families) with cystic fibrosis. We provide expert care and specialized disease management to help patients with cystic fibrosis live more fulfilling lives.

Patient Care – what to expect

Patients with cystic fibrosis are cared for by a multidisciplinary team including specialists in pulmonary medicine, gastroenterology, endocrinology and psychiatry. Our CF care team includes physicians, physician assistants, program coordinator, triage nurse, respiratory therapists, licensed clinical social worker, registered dietician and pharmacist. We provide diagnostic testing for new patients and comprehensive care for patients with cystic fibrosis. Care is individualized to the unique and specific needs of each patient. We are committed to delivering the best possible care for patients to live the best possible lives.

Cystic Fibrosis Treatment Includes:

• Medications, including antibiotics, pancreatic enzymes, special vitamins, inhaled bronchodilators, inhaled medications
• Airway clearance techniques (ACTs), such as high-frequency chest wall oscillation (the vest) and other devices
• Well-balanced diet with extra calories, fat, and salt
• Exercise
• Cystic fibrosis modulators, or drugs that target the basic defect causing CF

Cystic Fibrosis Resources

• Cystic Fibrosis Foundation (CFF) website has useful, up-to-date information for cystic fibrosis patients of all ages.
• Western Carolinas – Charlotte Chapter local chapter for resources and volunteer opportunities.
• CF Foundation Compass is a personalized, one-on-one service that provides people living with cystic fibrosis, and their families, a partner in dealing with challenges related to life with CF, no matter where you are in your CF journey.
• Learning to Take Charge of My Health as a Young Adult With CF CFF article
• Embracing the Realities of Aging With CF CFF article
• Aging with CF, Senior Support Virtual Group
• HealthWell Foundation (HW) grants: CF Treatments and CF Vitamins and Supplements
• Patient Advocate Foundation Co-Pay Relief (PAF) grants: CF Co-Pay/ Premium Assistance and CF Health Equity Fund
• The Assistance Fund grant (TAF) grants: CF Co-pay Assistance Program

Location of our Adult Cystic Fibrosis Center

Jan & Ed Brown Center for Pulmonary Medicine
1237 Harding Place Suite 3200
Charlotte, NC 28204

Phone: 704-355-5375
Fax: 704-468-0027

How to contact the CF Team

If you have CF and are interested in scheduling an appointment with our team, we do not require a referral to be seen in our office. However, please contact your insurance company to inquire if a referral is needed from their standpoint. 

If you are an established CF patient with our Center and need to schedule a follow-up appointment or have an urgent need, please reach out to our CF team during business hours of 8 a.m. to 4:30 p.m. at 704-355-5375 and ask to speak with a CF nurse.

MyChart can also be used for established patients with questions for the CF Team. If you are unable to find the CF team member you need to message in MyChart, send the message to your CF doctor and it will get routed to the correct multidisciplinary team member.

CF Multidisciplinary Team

• Program Coordinator – Shelly Degnan, BSN, RN 
• Triage Nurse – Shacurlyn McClary, RN
• Medical Assistant – Maria Marin, CMA
• Respiratory Therapist – Christine Pettograsso, RRT
• Clinical Pharmacist – Sarah Murray, PharmD, BCACP, CPP
• Dietitian – Rachel Isom, MS, RD, LDN, CDCES
• Social Worker/ Mental Health Coordinator – Alicia Lightfoot MSW, LCSW