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New video series highlights the power of caregiving

Locally based organization launched a series of videos to increase awareness about impact of a rare disease on patients and caregivers

Local residents Shelly Mathis and her husband Scott Calhoun shares how the rare lung disease, pulmonary fibrosis, has affected them.
Local residents Shelly Mathis and her husband Scott Calhoun shares how the rare lung disease, pulmonary fibrosis, has affected them. (PF Warriors)

PF Warriors is an international, patient support group located in Irving, Texas. Recently, PF Warriors launched a series of videos to increase awareness about a rare lung disease and its impact on patients and caregivers. “My Life with Pulmonary Fibrosis,” is being released during National Family Caregivers Month in November.

Pulmonary fibrosis (PF) is a rare disease that is identified by scarring in the lung tissue. Each year, about 40,000 - 50,000 new patients are diagnosed in the U.S. and another 40,000 die of the disease. The scarring, or fibrosis, of the lungs is irreversible and progressive, which leads to shortness of breath, chronic coughing and eventual reliance on supplemental oxygen.

PF Warriors reaches between 12,000 – 14,000 patients, caregivers, providers and partners who have been touched by fibrotic lung diseases. The PF Warriors community expands across the U.S. and in 14 other countries providingresources, educational programs and peer-to-peer support for caregivers and patients.

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“PF is a difficult condition and takes a physical and emotional toll on our members,” said Shelly Mathis, a caregiver and the executive director of PF Warriors. “These videos highlight the impact of the disease on our lives, but also demonstrate what encourages us to help each other.”

“My Life with Pulmonary Fibrosis,” was developed over a series of months. Every individual involved in the development and production of the videos was either a patient, a caregiver or a volunteer, which lends to the videos’ unique tone and approach.

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“Despite the production challenges — pandemic, difficulty of travel and a tight budget — we were able to create stories that exemplify what inspires us to continue living our best and fullest lives,” noted Bill Vick, a PF patient and founder of PF Warriors. Vick established the organization about 10 years ago because he recognized a need for a close-knit community of patients helping patients.

The campaign is supported by an unrestricted educational grant from Boehringer Ingelheim. The video series includes information about the ongoing efforts of physician-scientists and providers to improve patient lives. The experts are:

  • Kim Gorgens, Ph.D., Professor, Graduate School of Professional Psychology at the University of Denver
  • MeiLan Han, M.D., Professor of Medicine and chief of the Division of Pulmonary and Critical Care at the University of Michigan
  • Naftali Kaminski, M.D., Professor of Pulmonary Medicine; Section Chief, Pulmonary, Critical Care & Sleep Medicine, Yale School of Public Health
  • Yolanda Mageto, M.D., Medical Director of Interstitial Lung Disease, Baylor University Medical Center at Dallas

In addition to the videos, a public service announcement (PSA) has also been created and will be shared with targeted broadcast stations. The PSAs will run in space and locations donated by media. To view “My Life with Pulmonary Fibrosis” videos, go to:

https://pfwarriors.com/awareness/

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