Pulmonary fibrosis (PF), or scarring in the lungs, can result in a progressive, often deadly lung disease. You’ve probably never heard of it– yet the boomer population is most at risk. While PF is largely unknown, more than 50,000 new cases are diagnosed annually. That’s why each September, the Pulmonary Fibrosis Foundation (PFF) presents Pulmonary Fibrosis Awareness Month to spread the word nationwide and provide support to those who have been impacted by the disease.

According to a 2020 Pulmonary Fibrosis Foundation survey, 91% of those aged 60 and up do not know the symptoms of PF and 96% have never talked to their doctor about PF, showing a clear need to increase awareness and education for this older population around symptoms, risk factors, and treatment options.

What is Pulmonary Fibrosis and what are the symptoms?

More than 250,000 Americans are living with pulmonary fibrosis, which means scarring in the lungs that, over time, can destroy the normal lung and make it hard for oxygen to get into the bloodstream. Some patients might have a bothersome cough or notice that they tire more easily. Early in the course of the disease, many symptoms may appear mild.

As the disease progresses and scarring builds up in the air sacs of the lungs, shortness of breath during exercise and daily activities becomes common. People living with PF may also feel fatigued, weak, have chest discomfort, loss of appetite, or unexplained weight loss. Because these symptoms are common to many illnesses and may appear mild in the early stages, the disease is often initially misdiagnosed. Therefore, it is critical for patients to pinpoint symptoms early and know the risk factors for PF.

Why are Baby Boomers Most at Risk?

While PF can affect anyone, most cases are diagnosed in patients over the age of 60. In addition, current and former smokers are more likely to develop PF than those who have never smoked. A family history of interstitial lung disease (ILD) is also a risk factor, as is the use of certain treatments, such as chemotherapy or radiation and medications, such as amiodarone. Certain viral infections, air pollution, and some exposures in the workplace and environment may also be risk factors. Environmental causes may include exposure to mold or animal proteins such as from birds. Occupational causes may include exposure to inorganic dusts from coal mining or other industries.

If you are experiencing any of the above symptoms or risk factors, keep a list of them and consult your doctor. You can also visit www.AboutPF.org, where you’ll find helpful resources, including a downloadable checklist of symptoms and risk factors you can share with your doctor. Taking note of warning signs and proactively speaking with your doctor is crucial to improving early diagnoses.

What are the Treatment Options?

The first step in treatment is to find the cause of the PF. Your healthcare provider will want to ask many questions about your health and your family, work, and medication history. In addition, testing including a high-resolution chest CT scan, pulmonary function testing (PFTs) and blood studies will help to identify the cause. Some causes of PF can be managed to prevent disease progression (such as stopping a medication or treatment for an underlying autoimmune disease).

While there is no cure for scarring in the lung, there are a number of effective therapies for slowing PF, and early diagnosis is key to maximizing these treatment options. For some types of PF, there are medications called "antifibrotics" that can slow down disease progression. Lung transplantation is also a treatment option for some people with advanced PF and is considered on a case-by-case basis. Supportive care treatments, such as supplemental oxygen, medication, and pulmonary rehabilitation, can lessen symptoms of cough, shortness of breath, or fatigue. Every person diagnosed with PF has a unique experience, so it’s important to work closely with your healthcare provider to identify an appropriate treatment plan.

The Importance of Education, Advocacy, and Awareness

As part of Pulmonary Fibrosis Awareness Month in September, the PFF and the PF community will provide education about this unsuspected disease to help drive earlier diagnoses, advocate for needed research, and ultimately find a cure.

You can take part in the conversation by using the hashtag #BlueUp4PF on social media. Content including patient testimonial videos, PF facts, and more will be featured throughout the month to further increase awareness of PF. On September 25, supporters can unite with patients, families, and friends across the country to bring the spirit of the PFF National Walk Day to their communities.

Spreading useful information and providing helpful resources will lead to improved early detection and quality of life, so patients can live longer and better lives.

For more information about PF, please visit www.AboutPF.org.

About Sonye Danoff, MD, PhD

Dr. Sonye Danoff is Senior Medical Advisor for the Pulmonary Fibrosis Foundation (PFF), PFF Care Center Network, and PFF Patient Registry. She also is an Associate Professor of Medicine in the Division of Pulmonary and Critical Care Medicine, Co-Director of the Interstitial Lung Disease/Pulmonary Fibrosis Program, and Associate Director of the Myositis Center at Johns Hopkins University School of Medicine.