New Cystic Fibrosis Program at U of L
The new location starting 8/4/08 will be in the new U of L Health Care Outpatient Center, located at 401 E. Chestnut Street, 3rd Floor, Suite 310, Louisville, KY 40202. For appointments: Call 813-6500
Overview of Adult Cystic Fibrosis Program
Kay Burris, Nurse Coordinator and patient
What is Cystic Fibrosis?
Click here for video on Cystic Fibrosis
Cystic Fibrosis 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 porduct cause the body to produce unusually think, sticky mucus that:
- Clogs the lungs and leads to life-threatening lung infections
- Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food
In the 1950s, few children with Cystic Fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with Cystic Fibrosis. Many people with the disease can now expect to live into their 30s, 40s, and beyond.
Symptoms of Cystic Fibrosis
The Cystic Fibrosis gene is responsible for controlling salt and water transport across the cells lining the lung, pancrease, and other organs. When this gene is abnormal, secretions in these organs become dehydrated and sticky, and eventually clog airways and may block other organs (pancreas, intestines, male reproductive tract, bile ducts) as well.
People with Cystic Fibrosis can have a variety of symptoms, including:
- very salty-tasting skin
- persistent coughing, at times with phlegm
- frequent lung infections
- wheezing or shortness of breath
- poor growth/weight gain in spite of a good appetite
- frequent greasy, bulky stools or difficulty in bowel movements
Statistics
- About 1,000 new cases of Cystic Fibrosis are diagnosed each year
- More than 70% of patients are diagnosed by age two
- More than 40% of the Cystic Fibrosis patient population is age 18 or order
- In 2006, the predicted medican age of survival was 37 years
Cystic Fibrosis (CF) is the more common in the caucasian population, affective one in 3300 births. Other ethnic populations are affected less frequently, ranging from one in 10,000-15,000 births in Hispanic and African-American populations, to one in 30,000 Asian births.
Testing for Cystic Fibrosis
The standard test used to diagnose Cystic Fibrosis is the sweat test. This simple, painless test, measures the amount of salt in sweat. Direct testing for abnormalities in the Cystic Fibrosis gene (from a blood test) is also possible most of the time.
Principles of Treatment of Cystic Fibrosis
The treatment for Cystic Fibrosis is based upon the clearance of thick airway secretions, using chest percussion (e.g. clapping hands on the back and chest), inhaled treatments, and exercise. Antibiotics that fight the particular bacteria found in Cystic Fibrosis are used when the amount of infection in the chest becomes problematic, and may be administered by mouth, inhaled, or intravenously. The maintenance of porper nutrition is also essential, and requires a high calorie diet, supplementation of certain vitamins, and the use of enzymes that help to digest meals.
Clinical Outpatient Services Provided at the UofL Healthcare Outpatient Center - UofL Adult Cystic Fibrosis Center
Program Director: Rodney Folz, M.D., Ph.D., Professor of Medicine
Associate Program Director, David Hiestand, M.D., Ph.D., Assistant Professor of Medicine
Subin Jain, M.D., Clinical Assistant Professor
Adrian O'Hagan, M.D., Assistant Professor of Medicine
See Norton Newsletter, Norton/UL Cystic Fibrosis Program (PDF format)
The Center Provides:
- Medical management provided by Drs. Rodney Folz, David Hiesand, Adrian O'Hagan, and Subin Jain. Nutritional support by a registered dietician
- Support provided by a licensed respiratory therapist with in-house full pulmonary function lab
- Support by a licensed social worker
- A wide referral network is available for psychiatry, gastroenterology, endocrinology, ENT, surgery, and other specialties
Center Address:
U of L Health Care Outpatient Center, located at 401 E. Chestnut Street, 3rd Floor, Suite 310, Louisville, KY 40202.
