One in 20 people will live with a rare disease at some point in their life*. Rare Disease Day on February 28 provides an opportunity to help raise awareness for diseases that are not well known, such as pulmonary fibrosis (PF). For Rare Disease Day, the Pulmonary Fibrosis Foundation (PFF) aims to increase understanding of PF to drive home the importance of early diagnosis.
“The PFF is committed to providing quality disease education for the PF community,” said Dr. Joyce S. Lee, senior medical advisor for research and health care quality at the PFF. “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.”
Pulmonary Fibrosis: A Rare Lung Disease
PF is a progressive, debilitating lung disease that causes scarring of the lung tissue. The disease affects more than 200,000 Americans. PF is more likely to occur in those who are 60 years and older and in individuals with a history of smoking. While over 50,000 new cases are diagnosed annually, PF remains largely unknown. In fact, nearly 9 in 10 Americans do not know the symptoms, which include shortness of breath, fatigue and a dry, chronic cough, according to the PFF**. These symptoms are common, are often attributed to other causes and can appear mild in the early stages – all of which can lead to late-stage diagnoses.
Early Diagnosis is Key
Since PF is a debilitating, life-threatening disease, a precise and early diagnosis is crucial. However, for PF patients, the road to diagnosis can be long and difficult. Too often, the disease goes misdiagnosed or takes months to years to identify. And, many patients have never heard of PF until they are diagnosed. Pinpointing symptoms and taking action early by starting conversations with your doctor are key to improving patient outcomes.
Pinpoint PF
To help improve patient diagnosis and care, the PFF launched the public awareness campaign “Pinpoint PF” to help patients pinpoint risk factors and symptoms early. At-risk patients and caregivers can visit AboutPF.org to learn more about the disease. There, patients will find a PF Risk List of symptoms and risk factors to take to their next doctor’s appointment.
“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,” said Dr. Lee.
AboutPF.org also offers a way to find a local pulmonologist through the PFF Care Center Network, which includes medical centers with experience in the diagnosis and comprehensive treatment of PF. A knowledgeable team of PF experts will help patients receive an accurate diagnosis and the most up-to-date treatments and symptom management recommendations, which may include oxygen therapy, pulmonary rehabilitation, the use of medications and lung transplantation.
PF Advocacy Continues to Drive Education and Awareness
On March 10, PFF advocates will meet with legislators and congressional staff in a virtual version of Hill Day to raise awareness amongst decision-makers about PF, its impact on patients’ lives and the need for expanded federally-funded research. Hill Day is an opportunity for patients and their caregivers to advocate for legislation that will improve the lives of people living with PF. The PF community is invited to apply to participate in Hill Day 2021, here.
“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,” concluded Dr. Lee.
*RareDiseaseDay.org: https://www.rarediseaseday.org/article/what-is-rare-disease-day
**PFF National Consumer Survey Report: https://www.pulmonaryfibrosis.org/docs/default-source/marketing-brochures/pff-national-consumer-survey-report—for-review-updated-2-19-2020.pdf?sfvrsn=c479c8d_0
About the Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation (PFF) mobilizes people and resources to provide access to high quality care and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. The PFF has a four-star rating from Charity Navigator and is a Better Business Bureau and National Health Council accredited charity. For more information, visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733).
