Remembering Those PF Warriors Who Have Gone Before Us
As part of Pulmonary Fibrosis Awareness Month, we honor those who have died
One of the more difficult parts of my journey has been remembering those I’ve met or learned of who’ve passed away from pulmonary fibrosis (PF). There are so many. It’s why we must all move forward in pursuit of treatments and a cure.
The pulmonary fibrosis community must continue to be their voice.
Remembering those who fought the good fight
The Pulmonary Fibrosis Foundation (PFF) hosts the PFF Summit every other year. Following my diagnosis with idiopathic pulmonary fibrosis (IPF), I began to hear about that meeting, described as a crash course in everything PF.
The first PFF Summit I attended in person was in San Antonio in 2019. During that meeting, they showed a memorial tribute to those lost to this disease. The sheer number of people in the video took my breath away. It captured them with their names, photos, and years of birth and death.
I look for that video each year. The 2021 version is posted on the PFF YouTube channel.
Glenda Rouland
I met Glenda virtually through one of the online pulmonary fibrosis forums, and we finally met in person at the 2019 PFF Summit. Glenda was attending the event as a PFF ambassador and was accompanied by her husband, Darrell. My wife, Susan, was with me. The four of us hit it off immediately.
Glenda encouraged me to use my voice and become a PFF ambassador as well. I applied and was selected in 2020. Glenda had used her voice to raise awareness and advocate for the PF community.
From left, Sam Kirton, Susan Kirton, Darrell Rouland, and Glenda Rouland. (Photo by Sam Kirton)
Glenda passed away on Aug. 5, 2020.
Rita Ippolito Muzacz
I continued to work after my January 2017 diagnosis until September of that year. I was open with my team about my illness, and that September I stood in front of them to announce I was leaving. I shared that my disease was progressing, which made it difficult for me to continue my role with the company.
One of my colleagues, Megan Keir, shared with me at the end of the meeting that her mother, Rita, had IPF. The impact of my decision to share why I was departing was not lost on me as I discovered another connection within the pulmonary fibrosis community. Megan and I have continued to stay in touch since my departure.
Rita passed away on Feb. 28, 2018.
Jane Cypra
I began sharing my story on social media shortly after my diagnosis. The response of my friends and colleagues was so uplifting. This was the beginning of building our village, those people who wanted to be a part of our journey. We shared test results, clinic visit outcomes, and some of the challenges we faced. Our village held us up on this journey.
Two former colleagues, Harv and Lois Harvey, became a part of our village. Lois shared that her mother, Jane Cypra, had IPF and had been given five years to live following her diagnosis. She fought the disease for six years.
Jane passed away on Aug. 8, 2011.
Pulmonary Fibrosis Awareness Month
September is Pulmonary Fibrosis Awareness Month. It’s an opportunity to increase public awareness of this disease, which touches so many lives. Sharing your story invites others to share their story.
I continue to be amazed at the number of people I meet with some connection to PF. If you take the time to view the 2021 memorial tribute video, you’ll see many more people we’ve lost to this disease. I watched it again while preparing this column, and it’s still emotional for me to see those in the video with whom I had a relationship.
Imagine
Each year, PFF Walks occur across the United States. The in-person walks return this year and include one in Washington, D.C., near me. PFF has a sign for these events that reads, “I walk for ______.”
Each year I’ve walked, my sign reads, “I walk for a future generation without PF.” To reach that, we need to keep raising awareness, extending a hand to those new to this journey, and creating greater opportunities for research and participating in it.
Glenda, Rita, Jane, and those named in the video are not to be forgotten, but remembered as warriors. The drive to increase awareness is one way I can make every breath count.
Please share the name and memories of someone you lost to PF in the comments.
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.
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Comments
Patricia
My mother passed away in 2005. Although she had been suffering for a few years from a nasty cough and breathing issues, we didn't get a diagnosis of IPF until she was in the hospital when her breathing got really bad. They did a lung biopsy shortly before they had to put her in ICU. The results actually came back in the morning of the day she died. She was just a few days short of turning 77. Rest in peace, Mom.
Samuel Kirton
Patricia,
Thank you for sharing this with me. I am sorry for your loss. Even though it was some years ago, the loss of a loved one to this disease is still heartbreaking.
Sam ...
Dee
My 61 year old husband has in the past month been diagnosed with Idiopathic Pulmonary Fibrosis IPF/ILD. We are trying to come to grips with this. Its not something that was caught early but we are reeling. We had never even heard of it before and he was misdiagnosed with COPD about 2 months before his O2 levels started going into the low 70's upon exertion and we went to a different Dr and he sent him to the Pulmonary Specialist and got testing and HRCT scans etc. Everything is happening so fast and is so confusing and he has been denied the meds that are FDA approved at a discounted cost or free by Insurance. Where do we go,where do we start? Why arent more hearing about this horrible no cure disease? Thanks for letting me vent. Im devastated as is he. We are the love of each others lives and have been together almost 40 years.We have children and grandchildren and never saw this coming!
Samuel Kirton
Dee,
I am sorry to learn of your husband's diagnosis. I can appreciate all of the questions you may have and are in search of answers.
Without knowing where you are located it might be difficult to give you specific information. Regarding medications, the medications approved for IPF do require prior authorization by most insurers. If the drug is a medical necessity your husband's pulmonologist can provide more information to the insurer for re-consideration. Once approved this does require an annual process to extend the prescription for another year.
On the banner at the top of the Pulmonary Fibrosis News page are links I encourage you to explore. Pay particular attention to the Forums link. It is a community of those with a connection to PF. It is a safe place to ask questions and to read about others' experiences with this disease.
Also, visit the Pulmonary Fibrosis Foundation (PFF) website. There is a link to their educational materials and the Pulmonary Fibrosis Information Guide.
Finally, find a support group. Ask your pulmonologist if they are aware of any in your area. The PFF website also has links to locate support groups for both patients and caregivers.
Come back soon and let me know how you are doing.
Sam...