Being Idiopathic: Solving the Mystery of My Diagnosis
Researchers need help in investigating 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.
Unanswered questions
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.
Increasing awareness
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.
Join me
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.
About the Author
Comments
Vicky Forget
Hi I was diagnosed in 2015 witrh an unexplained substance in my left lower lung. I was working at the local hospital in a closed unit. I complained about the air and after 2 years of complaining the new Health and safety guy actually listened. He pushed until the hospital had testing done and we were moved immediately so the air handling unit could be replaced. He was walked out the door shortly afterwards. I became sick and saw a respirologist who said I now have IPF But could not identify why. It is sad because I am not the only one who ended up with some kind of lung issue.
Samuel Kirton
Vicky,
Thanks for reading the column and your comments. As you learned, airborne particulates are often the basis for many respiratory issues.
Sam ...
Mark Seigel
Diagnosed September 2020. Aged 62.
I firmly believe that my days in mining contributed to my IPF. In those days we did not wear masks and were covered in dust.
After I left mining I started to get painful waves of pins and needles across my chest and I could never figure out what was going on and neither could the doctors.
I believe this was the start of my IPF.
Samuel Kirton
Mark,
Thanks for reading the column and your comments. Sadly, that experience is shared by many. What type of mining were you involved with?
Sam ...
Cynthia Panza
I also have struggled with the question why and what could be the reason for me having this disease. Of course, doctors ask questions but nothing seemed to click. I had my second bout with pneumonia in Sept. 2020 I received the google diagnosis in our rural area.....you have 2 to 5 years. And I was put on oxygen 24/7. Then, being a snowbird, I headed south to Florida for the winter. I was able to hook up with a Cleveland Clinic pulmonologist there.
Having pneumonia, a childhood with a father who was a constant tobacco user--cigars, cigarettes, pipes, my years of smoking in college and about 10 years afterwards., teaching in old buildings that probably had some mold or other condition from their age, and the fact that I am totally a mouth-breather.....are all factors in my IPF but what does it matter at this point! We are all products of our environment. I am living with it. Treasuring each day. And, trying to keep up with the tests and the doctor's orders..... are about all I can do. And, I do think I probably had it awhile before being diagnosed. I just attributed getting out of breath from taking the stairs to old age!
Samuel Kirton
Cynthia,
Thanks for reading my column and your comments. I am curious if you are enrolled in the Pulmonary Fibrosis Foundation Community Registry. Researchers are in need of patients who have such a complex history to help them better understand pulmonary fibrosis. I think it does matter at this point so that a future generation may not have to know about pulmonary fibrosis.
Sam ...