PFF Opens Educational Site to Help People Better Understand Disease and Its Symptoms

PFF Opens Educational Site to Help People Better Understand Disease and Its Symptoms

The Pulmonary Fibrosis Foundation (PFF) created an educational website to increase awareness about this disease, with a goal of promoting earlier diagnosis among pulmonary fibrosis (PF) patients.

The website includes a video explaining the disease and outlining possible causes, stories from people with the disease, and offers a downloadable Pulmonary Fibrosis Risk List worksheet to promote better discussion between patients and physicians about disease symptoms and risk factors.

PF is complex, and encompasses many diseases, the video explains. What these diseases have in common are inflammation and scar tissue, and the main symptoms are shortness of breath, a dry cough, and fatigue.

“While pulmonary fibrosis is a very serious disease, many patients have never heard of it until they get the diagnosis,” William Schmidt, PFF’s president and chief executive officer, said in a press release.

“With 50,000 new cases of idiopathic pulmonary fibrosis diagnosed annually, and even more diagnoses of other types of PF, the importance of raising awareness is now greater than ever,” Schmidt added.

Connect with other patients and share tips on how to manage PF in our online forums!

The PF Risk List worksheet is designed to facilitate doctor visits. The idea is that once diagnosed, a better understanding of how to manage symptoms can help improve patients’ well-being. If needed, the site also provides help with locating a pulmonologist through the PFF Care Center Network.

Known risk factors for PF development include: being a current or former smoker, being age 65 or older, a family history of interstitial lung disease, the use of certain medications, environmental or occupational exposures (namely to specific aerosols, dusts, microbes or chemicals), and autoimmune diseases.

The most common type of PF is idiopathic, meaning that the cause of the disease is not completely understood.

“Individuals who are at risk or have symptoms need to be aware of this life-threatening disease,” said Schmidt. “Taking the next steps with your doctor and advocating for testing to determine if you have pulmonary fibrosis is crucial so treatment can begin as soon as possible.”

PFF’s goal is to prevent and cure the disease, but in the short term, researchers are working to control disease progression and symptoms. Patients needing assistance or wanting to learn more may call the Foundation’s Patient Support Line at 844-825-5733.

According to the organization’s website, more than 200,000 people in the U.S. are believed to have PF.

2 comments

  1. Peter C Doonanco says:

    I have been diagnosed with IPF about a year ago and am going through some of the experiences that, I imagine, all new patients encounter. I find this forum to be so very helpful to my wellbeing in that what I am going through is “normal”. Panicking when short of breath and not being able to recover very fast, feeling guilty for being unable to do what I did before and depending on family to do the necessary things I around the place, etc.
    What I would like to know is how or what does a IPF person go through in dying? I don’t mind being dead but getting there is what lays heavily on my mind. Does one suffocate in trying to breath, or does one just go to bed and not wake. Does the heart ❤️ stop or the brain go to neutral, stroke or what? I think we (IPF) people deserve a nice exit after going through the trying experiences of IPF! As do others with uncureable diseases. This is not a facetious question, perhaps some caregivers could answer this nagging question for me.

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