Honoring another warrior taken by idiopathic pulmonary fibrosis

On Jan. 18, Larry Runyon passed away at 76. Larry was a warrior fighting idiopathic pulmonary fibrosis (IPF) for more than 15 years. He’s certainly not the first person I’ve known who has passed because of IPF, but he is the first one to pass whom I’ve known for more than 30 years.

I had worked with Larry for a number of years when we were both special agents for the U.S. Air Force Office of Special Investigations (AFOSI). Larry retired from AFOSI in 1990 and ended up in the Pacific Northwest working in the Office of Counterintelligence at Pacific Northwest National Laboratory. Ultimately, I retired from AFOSI in 1997 and started a second career in the security and investigations industry in the mid-Atlantic region of the East Coast.

Occasionally, I would hear Larry’s name when speaking with people we both knew, but we didn’t keep in direct contact. Following my IPF diagnosis in January 2017, I sent out a note to friends on social media. Another former agent shared that information on a private page for retired agents. Larry’s wife, Cheryl, commented that Larry had also been diagnosed with IPF, which was news to me.

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Club IPF

Having a rare disease is a ticket to an exclusive club. Sadly, it’s usually a club that no one wants to join. Members of Club IPF, like many other rare diseases, have an almost immediate personal bond.

Club membership is not reserved exclusively for patients, however. Caregivers and other people who care about patients are also members. By responding to my message, Cheryl, who was also Larry’s caregiver, had renewed a relationship that now stretched across the United States.

The PF network

Club IPF has an informal information-sharing network that reaches people around the world. While I have met many members of this club in person, it is only a small fraction of the club’s total membership. Introductions are made through this informal network.

I recall that when I was planning to attend the Pulmonary Fibrosis Foundation Summit in 2019, Cheryl and Larry suggested I seek out another patient, Paul Hilliard, who was also attending the summit. When I introduced myself to Paul at the gathering in San Antonio, Texas, another immediate bond was formed. Paul, who had received a lung transplant, passed away in early 2021.

There are social media groups where patients discuss a wide variety of PF topics. Questions about specific medications and side effects are common. Some share the tips and tricks they’ve discovered for taking a particular medication. Sharing life hacks can make some of the challenges easier to deal with, especially for the newly diagnosed.

To be clear, this information-sharing network should not be used to glean medical advice. I often see informal testimonials regarding a specific medication combo or particular supplements. But what works for one person may have a negative effect on another. I encourage you to consult your own medical care team before making any medication changes or decisions, or using supplements your doctors have not prescribed.

One of the positive outcomes of the COVID-19 pandemic was the advent of an increased number of virtual support groups meeting via Zoom. Today, it is much easier to find a support group that meets your needs and schedule. The other benefit of virtual groups is their ability to reach those in underserved communities around the country.

Banded together

As a writer for Pulmonary Fibrosis News and its parent company, Bionews, exposure to other rare disease writers and their communities has been incredibly inspiring for me. Each of the rare disease publications represents a community of patients, caregivers, and families who have banded together to create a formidable foe against any disease.

Larry was a pulmonary fibrosis warrior. Rest now, warrior, we have the watch. The PF community will continue to pursue more effective therapies and ultimately a cure. Continuing the pursuit is my promise to 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.