Let’s Raise Awareness by Sharing Our Stories This September
As we head into the last week of August, summer has been flying by, kids are heading back to school, and fall will soon be upon us.
I love the cooler weather that fall brings, as I’ve found it’s been harder to breathe in the heat and humidity of summer since I was diagnosed with idiopathic pulmonary fibrosis (IPF) five years ago. I also enjoy the beauty of the changing leaves, along with the fall scents and colors.
In the Northern Hemisphere, fall begins in September, which also holds significance as PF Awareness Month.
During September, PF patients, caregivers, advocates, and medical professionals step up efforts to raise awareness of this life-threatening lung disease that has no cure. The IPF Foundation notes that an estimated 50,000 people die in the U.S. from this disease each year, which is more than most cancers. Despite this, I regularly hear that most people have never heard of IPF.
While fall is one of my favorite seasons, September requires a lot of work. It’s a time to talk about IPF and share our stories to raise awareness.
This year, BioNews, the parent company of Pulmonary Fibrosis News, is taking on a new initiative that I am coordinating alongside fellow columnist Kevin Olson. It’s called “30 Days of PF,” and the goal is to highlight the voices of patients and caregivers who are affected by this progressive lung disease.
I recently published a forum post about this initiative with an official invite to our community to participate by submitting a brief story about how this disease has affected you. If you’re a patient or caregiver, we would love to hear from you and include your contribution in this initiative, which will launch across PF News’ social media sites next month. We hope these stories will help debunk myths about IPF, educate others about this disease, and raise awareness.
Why is raising awareness important?
In 2017, I wrote a column about how PF Awareness Month feels less important than others. I would guess that if you stopped someone on the street and asked them what the color of the breast cancer awareness ribbon is, they would know it’s pink. But if you asked them what color the PF ribbon is, they likely wouldn’t know, and possibly would have never even heard of our disease.
Unfortunately, PF is always fatal without a lung transplant, since there is no cure. However, if a patient is diagnosed early, the disease can be managed, improving a patient’s quality of life.
Herein lies the problem: Early diagnosis rarely occurs because so few people, including physicians, know about IPF and what to look for. Early diagnosis is only one goal of some amazing organizations that are working hard to eradicate this disease.
This September, use your voice to help their efforts. Take advantage of the PF News social media platforms, which have an extensive reach, and share your story to raise awareness.
To participate in “30 Days of PF,” please submit a short essay of 300-400 words, along with a photo, to [email protected]. Several topic ideas include: what IPF has taught you; what your diagnostic experience was like; what you want others to know about IPF; and how you live with IPF each day.
Regardless of the topic, we want to hear from you. If you have any questions about this initiative or how you can help raise PF awareness this September, please don’t hesitate to get in touch. You can comment below or email me at [email protected].
We look forward to working alongside you to illuminate patient and caregiver voices during our strongest PF Awareness Month ever!
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.