An estimated 1 in 10 Americans, or 1 in 20 people globally, have or will have a rare disease at some point. Rare Disease Day takes place on February 28. Ultimately, the goal of Rare Disease Day is to amplify the voices of those within the rare disease community, raise awareness for a variety of conditions, and educate policymakers on decisions which can benefit patients. Now, the Pulmonary Fibrosis Foundation (PFF) has launched the “Pinpoint PF” campaign, and is offering a variety of educational resources, to build awareness around pulmonary fibrosis (PF).

Idiopathic Pulmonary Fibrosis (IPF)

According to the PFF, pulmonary fibrosis (PF):

means scarring in the lungs. Over time, the scar tissue can destroy the normal lung and make it hard for oxygen to get into your blood.

The PFF also explains that PF is not a singular disease, but a group of over 200 separate pulmonary conditions. PF can be caused by drug use, radiation therapy, mold or other environmental factors, autoimmune conditions, or exposure to chemicals or other irritants. Additional risk factors include age (60+) and smoking cigarettes.

However, in cases where doctors cannot determine a cause, it is called “idiopathic,” which literally translates into unknown cause. An estimated 13-20 out of every 100,000 people globally has IPF. Symptoms include:

• A dry, persistent, hacking cough that does not go away
• Shortness of breath and/or difficulty breathing
• Gastroesophageal reflux (GERD)
• Fast, shallow breathing
• Appetite loss
• Unintended weight loss
• Fatigue and muscle weakness
• Chest pain and pressure
• Clubbed fingers and toes
• Pneumonia
• Blood clots in the lungs
• Lung cancer

Unfortunately, following diagnosis, most patients only have a life expectancy of 3-5 years. However, because everyone’s condition advances or plateaus at a different rate, it is impossible to determine life expectancy with accuracy.

Raising Awareness

Without early diagnosis and treatment, patients with IPF may not experience the best outcomes. But as many patients with rare diseases know, the diagnostic journey is often long and stressful. Many patients have not heard of pulmonary fibrosis, or their condition is misdiagnosed by doctors. In some cases, the journey to diagnosis takes months or years. On average, for patients with rare diseases, it takes around 5 years to receive a proper diagnosis. Thus, being able to learn about PF and its symptoms could be crucial for someone to receive their diagnosis.

“Pinpoint PF” is designed to help people “pinpoint” these symptoms and risk factors. Additionally, the website offers insight into the differences between pulmonary fibrosis and COVID-19 symptoms, explaining:

While COVID-19 and PF share symptoms of shortness of breath and cough, patients with COVID-19 who develop shortness of breath usually experience acute onset and progression of this symptom over days and weeks, along with fever. PF symptoms are chronic and long-lasting.

Other “Pinpoint PF” resources include:

• A symptoms and risk list
• Opportunities to spread the information on social media
• Assistance finding the right medical professional

Beyond “Pinpoint PF,” the PFF is also working to raise awareness in a virtual Hill Day. As described on the PFF Hill Day 2021 Application:

PFF Advocates will meet with legislators and congressional staff via Zoom to advocate for pulmonary fibrosis research.

Hill Day will take place on Wednesday, March 10, 2021. If you would like to get involved, you must have availability between 9am and 5pm. Apply here.

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