How to make your voice heard this PF Awareness Month
There are multiple ways to be an advocate, a columnist explains
When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, I wasn’t familiar with the disease, so I set out to learn everything I could about it. I wanted to understand each test I would undergo and each medication I was taking. After receiving the gift of life during my bilateral lung transplant in July 2021, I wanted to work hard to care for my donor’s lungs.
Since then, raising awareness of pulmonary fibrosis (PF) has been a passion project for me. It’s not something I limit to specific events or times of the year.
I know not everyone is comfortable telling others about this disease and how it affects their life. But if you feel called to share your story, PF Awareness Month is a great time to do so. Following are several ways you can make your voice heard this September.
Sharing your knowledge
One of the best ways to increase awareness is to draw on your personal knowledge. The story of your lived experience provides a powerful glimpse into the life of a rare disease patient.
How can you share your story? A good start might be to identify your strengths.
If one of your strengths is writing, perhaps you’d like to contribute a guest column to Pulmonary Fibrosis News about your experience as a PF patient or caregiver. Brad Dell, director of community content at BioNews (the publisher of this site), shared the following instructions for participation:
“Those who want to submit to our Guest Voice programs should email [email protected], making their subject heading ‘Guest Voice: Pulmonary Fibrosis News.’ In the email body, include the gist of what you would like to write about. The topic can be anything from your diagnosis story to unique advice about how to navigate healthcare to making your voice heard about a current issue related to your disease. The content should not be promotional or marketing. Stories have a word budget between 400-800 words, are voluntary, and undergo an editing process.”
Another way to utilize your knowledge base is by participating in advocacy events hosted by the Pulmonary Fibrosis Foundation (PFF). One benefit of working with the foundation is that it provides training.
Tasks can be as simple as writing letters to your representatives on Capitol Hill. For those who don’t want to interact directly with others, these letter-writing campaigns are a good way to still make your voice heard.
You can also volunteer to speak with members of Congress about the PF community‘s needs. The support of these lawmakers is critical to funding disease research and passing important healthcare legislation. Participating in PFF’s annual virtual visit to Capitol Hill allows you to engage your representative without traveling to Washington, D.C. If you’re preparing to meet with a legislator, it may be helpful to create and practice an elevator speech about your experience as a patient or caregiver.
Why now?
Pulmonary Fibrosis Awareness Month is a time for the PF community to rally and raise awareness.
Throughout September, look for tips from the PFF on how to spread awareness. The foundation will be posting educational content throughout the month, including its “30 Facts in 30 Days” series. These bite-size snippets of information are easy to share on social media and discuss with friends and family. Explore the variety of frames you can add to your profile photo or awareness banners you can use for your cover photo.
I know I’ll be further engaged in advocacy during the awareness month. Once again, I’m signed up to lead the Fibrosis Fighters team at the Washington, D.C. PFF Walk. Want to walk with me on Oct. 7? Let me know in the comments.
How are you planning to raise awareness this month? I’d love to hear about your ideas. Together we create a louder voice. Garnering your support is how I can make every breath count.
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.
About the Author
Comments
daniel J degowin
I have been reading comments for the last four to five months.
there seems to be alot self help going on thru this website.
IPF , This is an insidious disease that is slow and steady and will rob you of your oxygen , your normal daily life and eventually take your life.
I suggest to all to find " the doctor " you both trust in and believe in to guide you in your difficult journey with IPF.
I have had this disease for the last 4 years and have been lucky enough to be able to proceed to the final stages lung transplant.'
Otherwise my fate would have been sealed by eventual death from this disease.
Please look for the right choices for you. Enjoy your time with family and friends. Pace yourself. Right now , today is what you have.
God bless.
Samuel Kirton
Hi Daniel,
Thanks for reading my column and for your comment. I agree with your comments.Some of the greatest support I have received during my journey has been from others on the journey.Please come by on occasion to let me know how you are doing.
Sam ...
Paula Ball
PART 1
Imagine going to a new doctor after moving across the country after retiring from working for 59 years of your life. You are excited about this new chapter you are opening and looking forward to living many more years, while enjoying your family and pet’s. You have had breathing issues with phlegm for years and just the year before had a heart attack, with a stint inserted. You think that this was probably the cause of the shortness of breath and phlegm. Yourbold Doctor diagnosed you with adult asthma and you accept his diagnosis, although you find this strange at your age.
You move and look for new doctors. In doing so you meet with a new young pulmonologist and feel that he will give you good care. He orders bloodwork and chest CT, then two days before Christmas you go back to hear what he has to say. You tell your spouse, who is disabled to wait in the car, as this should not take long. In walks your doctor and the first thing he says to you is: well you have what we call IPF and this is not a curable disease. You will probably live 3-5 years, if I start you on this medication which does have some side effects.
You look up at him and say, well, o.k. I guess it is what it is, while thinking to yourself, what the hell is he talking about, I’m out of here and looking for a second opinion. I have never been sick a day in my life with anything serious and have never smoked, lived with anyone who did, and have never done drugs or drank a lot. This has got to be wrong. I think I will go home and research what this idiot has just diagnosed me with. I go out to the car and tell my husband, who agrees with me, that guy is just wrong and we will find someone else, to give us a correct diagnosis.
Stay tuned as I write more in coming articles about this journey.