PF Foundation Spreading Awareness of This Rare Lung Disease for Feb. 28

Teresa Carvalho, MS avatar

by Teresa Carvalho, MS |

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For Rare Disease Day this Feb. 28, the Pulmonary Fibrosis Foundation (PFF) wants to raise public awareness of pulmonary fibrosis (PF), its symptoms and the importance of an early diagnosis.

“The PFF is committed to providing quality disease education for the PF community,” Joyce S. Lee, senior medical advisor for research and health care quality at the PFF, said in a press release.

“By spreading useful information and providing helpful resources, visibility of PF will continue to grow, leading to improved early detection and quality of life for those living with this devastating disease,” Lee added.

The group also encourages patients and their families to join its advocates for a virtual PFF Hill Day on March 10.

PF patients experience a wide range of symptoms, including breathlessness, fatigue, and cough. But, according to PFF’s 2020 National Consumer Survey Report, about 90% of people in the U.S. do not recognize these symptoms as signs of PF.

Doctors can also misattribute PF symptoms, delaying a proper diagnosis, as many are quite similar to symptoms of other lung disorders.

Recognizing PF symptoms soon after they appear is crucial for better outcomes, and the likelihood of an accurate and timely diagnosis depends on disease awareness.

“It’s important to ask your doctor to listen for crackles in your lungs, and about pulmonary function and/or high-resolution computed tomography (HRCT) tests, which can help facilitate a clear diagnosis,” Lee said.

To help in the diagnosis and care of people with PF, the PFF launched the Pinpoint PF campaign late last year to encourage patients to be more aware of PF symptoms and to bring them to a doctor’s attention more quickly.

This campaign includes an educational website addressing PF symptoms and risk factors. It also offers patient testimonials, a video explaining the disease, and a risk list of disease-related factors that people with concerns can take to a doctor’s appointment.

The website also includes a tool to find a local pulmonologist within the PFF Care Center Network, clinics with expertise in the diagnosis and treatment of PF.

A virtual version is planned for PFF Hill Day, an annual meeting of patients, their families, and disease advocates with U.S. lawmakers and congressional staff at the Capitol regarding legislation and policies supporting those affected by PF.

This year’s daylong event will take place on Wednesday, March 10, with meetings conducted via Zoom. Those interested in participating are asked to go here to register before the close of day on Sunday, Feb. 28.

“At the PFF, we will continue our efforts to combat this deadly disease, support individuals who are living with PF and eventually find a cure. Together, we will make a difference by letting the world know about pulmonary fibrosis,” Lee said.

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