The Cystic Fibrosis Foundation, which approves and accredits CF centers, is a great source of information for patients and families. Advise parents to visit www.cff.org for reliable and up-to-date information. This site provides locations of all of the accredited CF centers in the United States, information on clinical research studies, and general medical information on CF for families and patients. It is important to educate families to avoid reading too much on CF blogs or online chat or discussion groups. Sometimes the information found there is inaccurate or out of date.
The median survival for children with cystic fibrosis was 12 years in 1970, 24 years in 1985, and currently it is 38 years. We have a very large clinic for adults with CF at our center and here, as well as all over the country, there are individuals who are 40, even 60, years of age with CF. We haven’t found a cure for this disease, but the management has improved markedly over the years. Much of this improvement has been as a result of coordinated care at CF centers.
This column, Subspecialist Consult, regularly appears in Pediatric News, a publication of Elsevier. Dr. Lester is professor of pediatrics and section chief of pediatric pulmonary medicine at the University of Chicago, and director of the Cystic Fibrosis Center at the university. She said she had no relevant financial disclosures.