Individual Actions That Can Generate Pulmonary Fibrosis Awareness
In February of 2016, I joined the Greater Kansas City Pulmonary Fibrosis Support Group. As I attended more meetings, I realized PF awareness was important, and I wanted to make a difference.
Because I had a unique case of idiopathic pulmonary fibrosis (IPF) with ossification that excluded me from clinical trials, I started to focus my efforts on raising awareness. I helped with the support group’s 2016 and 2017 awareness displays during September’s PF Awareness Month, but I realized there were also ways I could individually make a difference.
Write a letter to the editor
In September of 2016, I asked all the Kansas City TV stations and The Kansas City Star newspaper to report on PF awareness, but I didn’t hear back. I finally sent a letter to the editor of The Kansas City Star. My interstitial lung disease pulmonologist said his patients were still discussing it two years after it was published.
Don’t underestimate what an individual can do. Maybe this year you could submit a letter to your local newspaper editor.
Design an awareness display
In 2018, my wife, Dana, and I designed an awareness display that was featured at the Platte County Community Center North in Platte City, Missouri, where we live, for the whole month of September. The exhibit offered various reading materials about PF, which the Pulmonary Fibrosis Foundation (PFF) provided for free. I was excited when all of the pamphlets and handouts were gone by the end of the month.
Consider doing an awareness display this year. It is not hard to gather all the materials. Coordinate with a local YMCA, healthcare facility, or other public organizations to host your exhibit. The display could be available for a few hours or a few days. The PFF has all the literature you need.
Ask your local newspaper to publish a story
In conjunction with the display, I contacted The Platte County Citizen, our small local newspaper, asking them to do a story on me and the exhibit. A reporter interviewed me and wrote the story.
A day after the article was published in September of 2018, I received a Facebook message from someone regarding PF awareness. I do not know how many people the article reached, but this individual was the tip of the iceberg. Having your story published is another way to raise PF awareness.
Give a presentation to local organizations
That same year, I had met and become close friends with a new member of the support group named Gary. He was also passionate about PF awareness, so as the awareness month approached, we planned what we wanted to accomplish.
In September of 2018, Gary coordinated with the Kansas City North Community Center to host a PF awareness display, which we both attended. In a conference room next door to the exhibition, the Take Off Pounds Sensibly group was holding a meeting. When their leader saw the PF display, she requested we do a presentation.
You could give a presentation about PF to various local organizations, such as a Rotary Club.
As my PF progressed, my identity changed. Fellow Pulmonary Fibrosis News columnist Christie Patient recently wrote about how her mom struggled to accept her new identity following her IPF diagnosis and progressive disability. I could relate to Christie’s story, but the change I experienced was different.
After my diagnosis, I became the human billboard for PF awareness. I wanted to engage people about the disease. So, I wore PF T-shirts, ordered a personalized license plate that says “Cure IP,” and got a tattoo that depicted bubbles being blown across the words “Just Breathe.” Dana also got a tattoo that shows a dandelion being blown across the words “Make Every Breath Count.”
The best icebreaker was probably me using my oxygen in public. People would be curious and ask why I was on oxygen. Most hadn’t heard of PF, so I gave them a business card with talking points.
My efforts were successful. While wearing a T-shirt in a grocery store, I met a man with PF, and we talked for a while. The tattoo is still a big talking point, especially at medical appointments.
Being a human billboard is how I express myself. You have to do so in a way that makes sense to you.
You don’t have to wait for PF Awareness Month to take action. You can find ways to raise awareness all year long, and you may be amazed by the impact you can have.
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.