Pulmonary Fibrosis Lung Disease
Pulmonary Fibrosis (PF) is one of the most deadly diseases still claiming lives every day that remains publicly unrecognized, even though it can strike anyone at anytime. It is fitting that ATS and PAR are highlighting pulmonary fibrosis this week and providing much needed information about this disease that flies under the radar of many physicians —including some pulmonologists—and much of the general public. Most often when patients and caregivers hear the diagnosis of pulmonary fibrosis, they are at a loss to even grasp what that means as it is both unfamiliar and shocking.
PF is a devastating disease caused by uncontrolled, relentless and unstoppable scarring in the lungs. It has grown in incidence and prevalence by 156 percent in the last several years. Recently, the CDC’s report on death rates for 2008 showed that respiratory diseases exceeded strokes and rank as the US third leading cause of death.
As PF prevalence grows, attention towards the disease is sorely lacking and even at a time in history when there are treatments for seemingly every illness, in the US there are no FDA approved treatments and no cure. The suffering that patients and families experience trying to deal with a 100 percent fatal disease is hard to put into words and it consumes the family and the entire circle of people involved with the patient.
The American Thoracic Society (ATS) and the PF patient organizations support research in PF and urge increased federally funded research, a national patient registry, as well as a public awareness and education program.
In the last 10 years, we have learned much about PF, but most of the puzzle is still unsolved. We are inspired to continue the fight and to push forward until we find a cure. Welcome to Pulmonary Fibrosis Week at the ATS.
Kevin Brown, MD
ATS PF PARtner — Coalition for Pulmonary Fibrosis
The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 25,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF.
Disclaimer: "The ATS Lung Disease Week Web site is designed for educational purposes only. You should not rely on this information as a substitute for personal medical attention, a diagnosis from a physician, or direct medical care. If you are concerned about your health or that of a family member, please consult your family's healthcare provider immediately. Do not wait for a response from our members, staff or partners."