Pulmonary Fibrosis Foundation Publishes Updated PF Information Guide

Pulmonary Fibrosis Foundation Publishes Updated PF Information Guide

The Pulmonary Fibrosis Foundation (PFF), a trusted resource for the estimated 200,000 Americans with pulmonary fibrosis (PF), has published its new “Pulmonary Fibrosis Information Guide —  which gives patients, family members and healthcare providers a better understanding of PF as well as idiopathic pulmonary fibrosis (IPF).

The 36-page guide, available online here and in hard copies (both are free; see below for information on ordering paper copies), also provides patients with the tools necessary to live with their disease and improve their quality of life.

According to the guide, care for PF or IPF is individualized, and disease progression varies greatly in those with the disease; physicians often discuss this challenge with patients. In this context, the guide underscores the need for patients to understand their condition and to ask their physicians important questions to ensure they get appropriate care based on their individual symptoms.

PF belongs to a family of related illnesses called interstitial lung diseases that can result in lung scarring. As lung tissue becomes scarred, it interferes the ability to breathe. As a result, the brain, heart and other organs may not get the oxygen they need to function properly.

In some cases, the cause of PF can be identified, but in IPF the cause is unknown.

One recent study estimates that IPF affects one of 200 Americans over the age of 65. About 50,000 new cases are diagnosed each year, and as many as 40,000 Americans die from IPF each year. Between 37,000 and 40,000 people living in the 28-nation European Union are believed to have IPF, with more than 5,000 cases diagnosed annually in the United Kingdom alone.

“Pulmonary fibrosis can be a confusing diagnosis,” David Lederer, MD, PFF’s senior medical advisor said in a news 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 was funded with help by Genentech and Boehringer Ingelheim Pharmaceuticals, and can be downloaded in English and Spanish. It features graphics that clearly illustrate the disease process of pulmonary fibrosis.

To request a free hard copy of the guide, contact the PFF Patient Communication Center at 844-Talk-PFF (844-825-5733) or email the Patient Communication Center at pcc@pulmonaryfibrosis.org.

2 comments

  1. Dawn Julius says:

    When will a medication that works be available to people? My father has IPF and I see him decline and can’t stand to see him go through this horrible disease

    • Tim Bossie says:

      We wish we knew Dawn. There is still so much about this disease that many researchers do not know about. It is not only a disease with unknown causes, there is no cure.

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