Pulmonary Fibrosis: The Unsuspected Disease Affecting Over 200K Americans

Sonye Danoff, MD, PhD
2 min readSep 14, 2020

--

September is Pulmonary Fibrosis Awareness Month, the perfect time to share important facts about this rare disease so patients can start conversations with their doctors.

While many people have heard of chronic lung diseases like COPD, asthma and cystic fibrosis, few are familiar with the interstitial lung diseases, also called pulmonary fibrosis (PF). More than 200,000 Americans are living with PF a largely unknown debilitating, progressive lung disease. To support September’s Pulmonary Fibrosis Awareness Month, the Pulmonary Fibrosis Foundation (PFF) and our PF community are here to share important facts about this rare disease and ways to spread the word this September.

Symptoms and Risk Factors

Over 50,000 people are diagnosed with PF each year, creating a growing population within the rare disease community. Despite this growing statistic, 86% of Americans* do not know the symptoms of PF, which include a dry, persistent cough, fatigue and shortness of breath.

Symptoms of PF are easy to dismiss. However, PF becomes harder to treat in its later stages, so it is important to identify early. Certain populations are at a higher risk of PF including:

· Those over the age of 60

· Current or past smokers

· Those with a family history of interstitial lung disease/PF

Effective Treatments

There is currently no known cure for PF. However, there are a number of treatment options. Supportive care treatments, such as supplemental oxygen and pulmonary rehabilitation, can lessen symptoms of cough, shortness of breath or fatigue. There are medications that can reduce the damage caused by PF and many new medications are being evaluated in clinical trials. Lung transplantation is also a treatment option for some individuals with late-stage PF and is considered on a case-by-case basis.

Education and Awareness

The PFF is actively involved in education and increasing awareness through patient and physician education materials, webinars and conferences, However, our patient advocates are the most powerful force in fulfilling the mission of the PFF. Their diversity in diagnosis, experience and treatment paints a realistic picture of just how differently PF impacts the lives of its patients. As such, there are no better representatives to spearhead September’s Pulmonary Fibrosis Awareness Month.

For Pulmonary Fibrosis Awareness Month, PFF will be sharing “30 Facts In 30 Days” on our social media channels to educate the public about the disease. To further illustrate PF’s impact on patients, their families and caregivers, the “Portraits of PF” series will also showcase stories of #PFHeroes and take a deep-dive into the day-to-day reality of life with PF. In addition, skylines across the country will shine blue in September as iconic buildings change their color in honor of the observance.

For more information about pulmonary fibrosis, please visit www.AboutPF.org. To learn more about Pulmonary Fibrosis Awareness Month and to get involved, visit https://www.pulmonaryfibrosis.org/get-involved/pf-awareness.

*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

--

--

Sonye Danoff, MD, PhD

Senior Medical Advisor for the Pulmonary Fibrosis Foundation