The need for pulmonary fibrosis awareness never ends

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, the disease was a mystery to me. I’ve shared before that when my wife, Susan, and I left the clinic following my diagnosis, we began to search for information from the parking garage. That thirst for knowledge hasn’t changed during my journey.

Learning about any rare disease is a lifelong experience. Since 2017, I’ve been working to better understand the progression of IPF, what all of the tests are for, what the results mean, and which claims are too good to be true.

One of the most important things I’ve discovered is that there’s always more to learn. My brother’s recent IPF diagnosis proved that point.

When I received my bilateral lung transplant in July 2021, a new chapter of my journey began. As I’ve shared, life post-transplant is a lot of work. The procedure wasn’t a cure, but my quality of life improved dramatically, and I’m thankful to my donor and donor family every single day. I’m obligated to take care of their gift.

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Using my knowledge to spread PF awareness

I can best use the knowledge I’ve gained by sharing it. During the year you’ll find me leading or co-leading support groups, speaking about my experience as an IPF patient and lung transplant recipient, and spending time with newly diagnosed patients and their families to answer questions about my life with IPF.

Throughout September, recognized as Pulmonary Fibrosis Awareness Month (PFAM), I’ve spent time on the phone with congressional staff advocating for matters important to the pulmonary fibrosis community. I’ve gone to email when I couldn’t reach a staff member by phone.

I’ve written about some of the topics I discussed with the staff, such as the Supplemental Oxygen Access Reform Act of 2024 and the use of molecular diagnostics to diagnose organ rejections earlier in transplant recipients.

Since my lung transplant, I’ve become more active as an advocate for organ donation. I share that everyone can be an organ donor, which is a special need in minority communities.

According to the United Network for Organ Sharing, certain conditions, such as kidney disease, disproportionately affect communities of color, often necessitating a transplant. While organ donation among Black and Hispanic communities has increased in recent years, more minority donors are needed.

While organ donation generally isn’t limited by race or ethnic background, there are exceptions. In cases where immune system matching is required, the best match often comes from donors with similar ethnic backgrounds.

PFAM may be coming to a close, but don’t let awareness activities stop after September. The need to continue raising pulmonary fibrosis awareness is real.

Next month I’ll be taking part in the Pulmonary Fibrosis Foundation Walk in National Harbor, Maryland, where the goal is to “walk together toward a cure for pulmonary fibrosis.” If you’re in the area, come introduce yourself and join my team, Fibrosis Fighters, in October. Registration is free. I’d love to hear your story.

I’m constantly looking for new ways to increase awareness of PF. Doing that is another way I make every breath count.

Do you find ways to contribute to this effort? Please tell me in the comments below. And if you’re in the U.S., make your voice heard by exercising your right to vote.

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.