30 Days of PF: An Outsider’s Perspective

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by BioNews Staff |

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Photo courtesy of Kevin Schaefer

Day 28 of 30

This is Kevin Schaefer’s story:

Four years ago, I accepted a position at BioNews Services, the parent company of Pulmonary Fibrosis News. Having lived with a neuromuscular condition called spinal muscular atrophy my entire life, I already had a direct connection to the world of disabilities and rare diseases. What I didn’t realize at that time was how much I didn’t know about conditions that were vastly different from my own, such as pulmonary fibrosis (PF).

Before working for BioNews, I had never even heard of PF. Yet, through working with individuals like PF columnists Charlene Marshall and Christie Patient, I’ve gained insight and a better understanding of this community. I’ve learned how difficult it is for someone with PF simply to be out in public, due to having to monitor their oxygen levels constantly. Even before the COVID-19 pandemic, being in a crowd could pose a severe threat to someone with PF. When every day is a struggle to breathe properly, your life becomes about survival.

In learning about the nuances of PF and the stories of patients and caregivers, my biggest takeaway is that this is a community defined by strength and resilience. People support each other in the midst of daily suffering, and they always cling to hope.

When I think about the power of hope while living with PF, I think of Kim Fredrickson. Kim was a columnist for Pulmonary Fibrosis News, whose words inspired readers from all stages of life. The obstacles she faced in her life were never a hindrance to her extending compassion and selflessness to others. Though she passed away in 2019, Kim’s legacy continues in the words she wrote and the countless lives she touched.

My deepest gratitude to everyone who contributed to this campaign. Your stories educate, inspire, and make others in this community feel less alone.

Note: Kevin Schaefer is a columnist for BioNews Services. He writes the column “Embracing My Inner Alien” for SMA News Today.

Pulmonary Fibrosis News’ 30 Days of PF campaign will publish one story per day for PF Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPF, or read the full series.

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