Next month is the five-year anniversary of when I first heard the words “idiopathic pulmonary fibrosis.” I was diagnosed by a pulmonologist at a local respiratory care center, where I’d finally been referred after 13 months of dealing with persistent shortness of breath, dry cough, and fatigue. I try not to think about that day, but when I do, the memory is as vivid as ever.
Shortly after my IPF diagnosis, I made the conscious decision to be an active participant in my healthcare. I would challenge my physicians by doing my own research, asking questions, and complying with the treatments that felt right for my body and lifestyle. I also chose to become an advocate for people living with not only IPF but all interstitial lung diseases, especially those who are young.
Part of being an advocate is choosing to share your story and be vulnerable about some of the hardest aspects of living with this life-threatening lung disease. I’ve done that through writing for Pulmonary Fibrosis News for nearly the whole time I’ve had IPF. I have also shared my story with a New York Times best-selling author who has written a beautiful book about a young adult with IPF called “Pack Up the Moon.” The book will be released in June, though I’m currently reading an advance copy of it.
These are just a few ways I’ve chosen to share my story and the experience of living with a life-threatening lung disease as a young adult. I am OK with being vulnerable and letting others know about the difficulties of IPF, even when sharing stirs up big emotions.
Recently, I was asked about my experience with clinical trials as an IPF patient. Many rare patients view clinical trials as a source of hope, a possibility to develop something that helps make our lives easier. Hope is important in the rare disease community, but I’ll save that topic for another column.
Unfortunately, I have not had any experience with clinical trials because I am always excluded based on my age. When I was diagnosed, my doctor said he didn’t know how my IPF was going to behave, because it was unusual for someone so young to be diagnosed with this lung disease.
In many ways, I ended up with the short end of the stick.
Clinical trials and my inability to participate stir up some of those big emotions I mentioned earlier. Not only am I excluded based on criteria listed on clinicaltrials.gov, I’m also never presented with any clinical trial information during my outpatient appointments or hospital admissions. I have to go searching for the hope that clinical trials bring to rare disease patients, including those with IPF. It’s never presented to me.
In the five years that IPF has been part of my life, I’ve been privileged to interact with many other patients through both my columns and the PF News Forums. We talk about clinical trials a lot, and not only does participating in them bring hope to other patients, but they also help others live with our disease. The information obtained from a clinical trial, even one that isn’t successful, is often helpful to researchers and medical professionals or can be applied to future trials. Being excluded from participating also makes me feel like I’m unable to help other IPF patients.
To answer the question about my participation in clinical trials, I wish I had an experience to share. I wish my participation in a trial left me feeling hopeful, or that I would be helping the trial organizers better understand IPF for future generations. Unfortunately, that isn’t the case because of my age, which is just one of many disadvantages of living with IPF as a young adult.
What has your experience with clinical trials been like as a PF/IPF patient?