Cystic Fibrosis Information for Parents

What is Cystic Fibrosis?

Cystic fibrosis (CF) is an inherited disease that causes glands throughout the body to make abnormally thick, sticky mucus. The most frequently affected organs include the lungs and pancreas. The intestines, liver, sweat glands and reproductive organs also may be affected.

About 30,000 people in the United States are affected with the disease, and about 1,000 babies are born with it each year. Cystic fibrosis is a complicated illness that requires clinical care by a physician or other health care professional. More information about cystic fibrosis can be found on the following sites.

UPMC Children’s Hospital Child Health Library 


Infection Control

UPMC Children's Hospital of Pittsburgh’s Cystic Fibrosis (CF) Center has established guidelines for controlling the spread of infection in clinic and in the hospital for the protection of our cystic fibrosis patients. Please review these guidelines at the link below:

Infection Control Guidelines

Additional information about infection control is available through the Cystic Fibrosis Foundation.

For questions or more information, please contact Children’s CF Center at 412-692-5630.

Quality Improvement Initiative

The Cystic Fibrosis Foundation (CFF) is committed to providing every Cystic Fibrosis Foundation–accredited care center throughout the United States with the opportunity to improve the quality of care delivered to patients with Cystic Fibrosis (CF) and their families. A standardized training program is being offered to assist centers in looking at how their center can accelerate the rate of improvement in CF care. The Cystic Fibrosis Center at UPMC Children’s Hospital applied to and was accepted to be part of the 5th CFF Learning and Leadership Collaborative, and spent two days in 2007 learning with experts in quality improvement in Baltimore.

Children’s CF Center has developed a Quality Improvement (QI) Lead Team for our pediatric and adult programs. The team consists of representatives from each of the disciplines including administration, physicians, nurses, dietitians, respiratory therapists and social workers as well as parents. The mission of the Center’s QI Lead Team is to improve outcomes by assessing operations and developing goals and projects. Often QI projects are based on data from the CF Center annual report and the CFF.

A Note Regarding Refills

Insurance coverage may dictate pharmacy providers. A reminder when you call to request refills, remember to give yourself ample time so that you do not run out of medication. We recommend a two-week turnaround, as many insurances companies now require prior authorization for many medications.


Additional Resources

Cystic Fibrosis Foundation

The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. 

Muriel's Breath of Life

A nonprofit, family-led initiative administered in partnership with Children's Hospital of Pittsburgh Foundation, Muriel’s Breath of Life raises funds that directly benefit children and adults with cystic fibrosis who are under the care of the Antonio J. and Janet Palumbo Cystic Fibrosis Center at UPMC Children's Hospital of Pittsburgh and UPMC's Comprehensive Lung Center.


News

Flu Shots

Ask your primary care doctor or cystic fibrosis team about getting immunized against influenza. Vaccines usually are available in September.

Clinic Relocation