Being Idiopathic: Solving the Mystery of My Diagnosis
Researchers need help in their investigations into the cause of pulmonary fibrosis
I’ve spent much of my working life conducting investigations. As a special agent for the Air Force Office of Special Investigations and in a second career providing security and investigative services under contract to the federal government, the cases all had similar objectives. Simply stated, any investigation needs to answer six questions: who, what, when, where, why, and how.
If any of the questions aren’t answered, you should continue to develop information to address them.
In my professional life, unanswered questions have never been an outcome I’m comfortable with. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, one word in my diagnosis left me with an unanswered question: “idiopathic,” which indicates the cause of my pulmonary fibrosis is unknown.
Over the last five and a half years, even as new causes of pulmonary fibrosis have been identified, my case remains idiopathic.
To find these answers, one of the first steps is to increase awareness.
During September, which is Pulmonary Fibrosis Awareness Month, increased awareness can take many forms. You can share your story, as you might be surprised by how many people are not familiar with PF. You can also share the Friends and Family Card from the Pulmonary Fibrosis Foundation (PFF), which contains essential details about the disease.
Pursuing the truth
September is also a time to boost awareness of the need to fund research, which is key to further identifying the causes of PF. Funding research can take many forms, from the individual, grassroots level to nationwide campaigns.
Events like the PFF Walk are held annually in September. Proceeds from the walk fund the PFF mission, which includes research.
In the United States, pulmonary fibrosis is a topic area of the Peer Reviewed Medical Research Program (PRMRP), funded under the Congressionally Directed Medical Research Program. Each year, members of the PF community must advocate to members of Congress to keep PF a PRMRP topic area.
Unlocking the mystery
Many scientists, investigators, and researchers are working to find the next significant piece of data that will unlock the idiopathic mystery. Their work pulls on threads of data to follow an idea that they believe has the potential to discover what’s now unknown.
Each of those threads represents a valuable contribution to PF research, even those that are seemingly fruitless. When a theory is disproved, that research energy can be redirected to other projects.
Are you the key?
What if you are the key?
In a recent column, I introduced readers to the PFF Community Registry. Your participation in the registry provides data points that are valuable to future research opportunities. Observational studies such as the registry also provide an opportunity to identify candidates for future interventional studies, which can lead to unraveling this mystery.
Living with IPF
Moving my cause from unknown to known would remove the stress induced by the “idiopathic” label.
My children know what I’ve experienced during my IPF journey. I want them to share it with my grandchildren. My oldest granddaughter, Abigail, knows Pop with a cannula, which provides oxygen. My youngest granddaughter, Charlotte, has never met Pop in person. (That day is coming soon.)
I want them to understand as much as they can about IPF to see the signs as early as possible.
The PFF Washington, D.C., walk is set for Oct. 8 at National Harbor in Maryland. I’ll be there with the team Fibrosis Fighters to participate in raising awareness and research funding.
If you see me, please say hello and tell me your story. It may be the lead I’m looking for to build a future column. Being stronger together is another way 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.