Adult Cystic Fibrosis

adult-cystic-fibrosis

Cystic fibrosis (CF) is an inherited condition caused by a defective gene which causes the body to produce abnormally thick and sticky fluid, called mucus. This mucus builds up in the breathing passages of the lungs and in the pancreas, the organ that helps to break down and absorb food. This collection of sticky mucus results in life-threatening lung infections and serious digestion problems. The disease may also affect the sweat glands and a man’s reproductive system. Millions of Americans carry the defective CF gene, but do not have any symptoms. That’s because a person with CF must inherit two defective CF genes – one from each parent. An estimated 1 in 29 Caucasian Americans have the CF gene. The disease is the most common, deadly, inherited disorder affecting Caucasians in the United States. It’s more common among those of Northern or Central European descent. Most children with CF are diagnosed by age 2. A small number, however, are not diagnosed until age 18 or older. Occasionally, relatively mild symptoms may lead to frequent misdiagnosis or no diagnosis at all unless the symptoms become worse. The condition may be misdiagnosed as emphysema, asthma or chronic bronchitis. These patients usually have a milder form of the disease. About 30,000 Americans, and 70,000 people worldwide are living with cystic fibrosis. Only a few decades ago, children with CF seldom survived elementary school. Today, thanks to earlier diagnosis and improved treatments, 47 percent reach 18 or older.

Dr. Schaefer helped to establish the Adult Cystic Fibrosis Program at the UMass-Memorial Medical Center.  He sees patients with CF at the CF Center at UMass-Memorial University campus, as well as in MLA’s Worcester office.

UMass-Memorial / University of Massachusetts Medical School Adult Cystic Fibrosis Program

The UMass-Memorial Adult Cystic Fibrosis Center, accredited by the national Cystic Fibrosis Foundation, specializes in the management of adults with cystic fibrosis. We provide a team approach to care that includes medical, nurse, registered dietician, physical therapy, social worker, and respiratory therapy cystic fibrosis specialists. We collaborate closely with our colleagues in the UMass-Memorial Pediatric Cystic Fibrosis Center to assist adolescents and young adults in the transition from pediatric to adult care.

Our services

  • Comprehensive cystic fibrosis diagnosis including sweat testing and blood testing for all known mutations related to cystic fibrosis.
  • Full range of treatments for all complications related to cystic fibrosis, including those involving the respiratory, sinus, digestive, endocrine, and reproductive systems.
  • Management of cystic fibrosis lung disease, including mucus clearance techniques, mucolytics, and preventive therapy for patients infected with pseudomonas.
  • Comprehensive nutrition counseling and care, including pancreatic enzyme replacement therapy, screening for and repletion of vitamin deficiencies.
  • Cystic fibrosis education and counseling.

 

The Adult CF care team includes:

Oren Schaefer, MD, David Fish, MD, Dottie Page, FNP, Connie Kazarian, LSW and Nisha Pai, RRD

Dr. Schaefer has been on the faculty at the University of Massachusetts Medical School since 1993 and is currently a Clinical Associate Professor of Medicine.  He helped establish and is the Director of the Adult CF Program. He specializes in Pulmonary, Allergy & Critical Care Medicine.  He has received additional specialized training in CF at the University of North Carolina, and the Dartmouth-Hitchcock Medical Center.

Dr. David Fish has joined the program as its Associate Director.  He has been trained in both Internal Medicine and Pediatrics, and currently works in the Division of Hospital Medicine.

Dottie Page, FNP, nurse coordinator and Connie Kazarian, LSW, our CF social worker, have been members of the CF team at the Medical Center since 1985.  Nisha Pai, RRD recently joined the CF Center to provide expert nutritional counseling to our patients. Additionally, we work closely with experts in Gastroenterology, Endocrinology (diabetes), Transplant Surgery and Palliative Care, amongst others to provide the most comprehensive care to our patients.