I’m still writing about IPF 6 years after my diagnosis
The days surrounding April 7 each year are emotional for me. On this day in 2016, I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) at the age of 28. Like many others, I had never heard of IPF and knew nothing about this debilitating and life-threatening lung disease. Also, as an active young adult, I was oblivious to the fact that I could be diagnosed with a serious respiratory illness in my twenties.
I started writing this column shortly after my diagnosis, which is hard to believe now. I have been part of the BioNews family for almost six years and have come to know and love many rare disease patients who are also employees of this organization, which publishes several sites, including Pulmonary Fibrosis News. Over the years, this column has given me a platform to advocate for people with IPF—a coping mechanism I didn’t even know I needed.
When I tell others about this column, I am often asked how I find topics to write about. I admit that finding a subject is more difficult some weeks than others. But I’m learning so much while navigating life with chronic lung disease, and I feel a responsibility to share those lessons with others, especially if they make life a little easier for my fellow IPF patients.
This same sense of responsibility is why I, along with other patients and the founder of the Pulmonary Wellness Foundation, Dr. Noah Greenspan, started a two-year project to write a comprehensive book on living with IPF. and other interstitial lung diseases. I sincerely believe that patient perspectives and knowledge are invaluable.
Another purpose of this column is to discuss the management of the disease, because only those of us who have it can speak from lived experience. As patients, we are our best advocates and our learning is never done, especially when our disease is rare.
At times, this column has focused on simple tips and tricks, from managing the side effects of antifibrotic medications to making activities of daily living, like showering, easier. Other times it has been a platform for dealing with the emotionally and mentally challenging aspects of this disease, such as losing friends to IPF or dealing with lung transplantation or palliative care options.
But in addition to these difficult topics, I also share celebratory moments and opportunities that I have received through IPF. I intentionally try to write about the things IPF patients can still do despite their lung disease, such as traveling, camping, or celebrating milestones and vacations with friends and family.
Whatever topics I choose to write about, I’ve always had three main goals for my column.
First, I want other IPF patients to feel less alone and have someone who can relate to their experiences. I strive to read every comment left in my columns, and it never gets old when someone shares that my words resonated with them, or that my writing helped them on their IPF journey in some way.
Second, as mentioned above, I want to share what I’ve learned about living with REIT so that others’ experiences will be a little easier.
Third, and arguably most important, I want this column to demonstrate that the prognosis for patients with IPF is not always accurate. Although the data is outdated, a life expectancy of three to five years after diagnosis still comes up with a quick Google search, and that understandably terrifies those newly diagnosed. Please consider my experience and this column, proof that you can live beyond these predicted numbers.
I am grateful to have had this platform to engage with so many of you over the years!
To note: Pulmonary Fibrosis News is strictly a disease news and information site. It does not provide medical advice, diagnostic, or treatment. This content is not intended to be a substitute for professional medical advice, diagnostic, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 relating to pulmonary fibrosis.