The Pulmonary Fibrosis Foundation (PFF) recently released its updated “Pulmonary Fibrosis Information Guide,” a resource to provide patients and families with updated information about pulmonary fibrosis (PF), treatment options, and methods of managing health while living with the disease.
PF causes scarring in the lung tissue, limiting oxygen intake. As a result, the brain, heart, and other organs may not get enough oxygen to function normally.
The online and hard-copy guide (both free; see below to order hard copies) was written in English and Spanish (the Spanish guide is titled “Guía de Información Sobre la Fibrosis Pulmonar“) and features graphics to clearly illustrate the processes behind the development of the disease.
PFF’s guide offers information about the purpose of this initiative; a definition of pulmonary fibrosis; information on its prevalence and incidence; causes of the disease; symptoms; diagnostic tests available; treatment options; and information on the importance of regular monitoring.
It also includes information on palliative and hospice care; lifestyle changes; how to maintain your own care; what questions to ask healthcare providers; more information about the work developed by PFF; as well as a glossary of PF-related medical terms.
“Pulmonary fibrosis can be a confusing diagnosis,” David Lederer, MD, the senior medical advisor of education and awareness for PFF, said in a press release. “Information available online and through other sources is not always accurate. Our new ‘Pulmonary Fibrosis Information Guide’ was designed to provide clear, accurate, easy-to-understand information for people living with PF and their caregivers.”
The guide also suggests ways to stay connected with the PFF — for example, by contacting the foundation directly and requesting invitations to awareness events, information about online communities and support groups, and updates regarding clinical trials, emerging therapies, support group announcements, Team PFF announcements, and calls to action and fundraising campaigns.
References for people interested in additional reading about pulmonary fibrosis are also provided in the guide.
PFF’s updated guide was funded with the help of international pharmaceutical companies Genentech and Boehringer Ingelheim.
To request free hard copies of the guide, contact the PFF Patient Communication Center at 844-Talk-PFF (844-825-5733) or email the Patient Communication Center at firstname.lastname@example.org.
This year, the Pulmonary Fibrosis Foundation’s fourth international healthcare conference, PFF Summit 2017, will take place Nov. 9-11 in Nashville, Tennessee. The conference fosters a collaborative environment to improve pulmonary fibrosis education and awareness and to identify new treatment approaches. Registration will open in April.