Progress in PF research requires patient participation
My pulmonary fibrosis diagnosis became my call to help every patient
Today, I’m wrapping up another trip around the sun.
On Oct. 4, 1957, the day I was born, the former Soviet Union launched Sputnik 1, Earth’s first artificial satellite. I’ve often wondered if there’s any relationship between my birthday and my love of space. Astronomy was my science during my undergraduate years, when I could explain in detail the definition of a parsec and do the calculations. Not so much today. But I still recall a parsec is 3.26 light-years.
Tomorrow starts a new trip around the sun, and I cannot wait to see what the future holds.
A whole new world and a new lease on life
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, a whole new world opened up to me. I asked my pulmonologist how I could help. Almost immediately, I learned of opportunities to participate in research. Within a week I was taking part in my first IPF study.
I received my bilateral lung transplant on July 10, 2021. I had a new lease on life, thanks to a generous gift from a donor, and a second birthday to celebrate each year.
Being a transplant recipient didn’t stop my desire to participate in research, however. I’m still being followed in a history study that looks for changes over time based on blood draws.
As a lung transplant recipient, I’ve had to commit to a lifetime of medical surveillance and be disciplined about my medications, to make sure I take them as prescribed. New therapies or treatments in both the pre-transplant and post-transplant realms rely on medications that have been available for some time.
Research requires participation
Why hasn’t another therapy been developed and approved? In my view, it’s not for lack of effort. Serving as a consumer reviewer for the Congressionally Directed Medical Research Programs, I represent the patient voice to a team that’s reviewing research funding proposals. Smart scientists are proposing their hypotheses in the hope of funding under the Peer Reviewed Medical Research Programs. Pulmonary fibrosis is an area of interest.
The pharmaceutical community is working on the next therapy or a cure for PF. Many of these projects don’t become public knowledge until they reach clinical trials. Pulmonary Fibrosis News, in fact, provides information regularly about clinical trials that are underway.
One of us may hold the key that will unravel the mystery behind PF. But for a new therapy or effort toward a cure to be successful, many people must participate. Thankfully, there are a number of ways to take part.
The PFF Community Registry is seeking patients, caregivers, and family members of people with PF or interstitial lung disease, along with lung transplant recipients, to participate. The data collected are valuable to researchers and provides demographic information on candidates who might be a match for a clinical trial.
It’s so important to participate in these efforts. Any one of us could be the key to a future successful therapy.
I often imagine a future generation that won’t know PF. This trip around the sun has made me more mindful of all that must be done. Tomorrow, I’ll begin another of those trips. And do you know what I want for my birthday? I want everybody reading this column to look at just one of these opportunities. Asking my readers to be a part of the solution is how I continue to make every breath count.
Please leave me a comment to let me know if you found one of these opportunities you can support.
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.