In honor of Pulmonary Fibrosis Awareness Month, I’d like to tell you, in my own voice, what it’s been like living with a terminal lung disease as a young woman. Naturally, I felt very alone, unsettled, and isolated from my peers when I was diagnosed. Sharing about my experiences, however, has not only helped others, it’s also helped me live with IPF. Here is my story—listen along or read!
According to the literature, while some of it may be outdated, many patients only live for a few years after their diagnosis of IPF. Accepting this was by far the hardest part of learning that I have this fatal lung disease. It has since given me an opportunity to focus on what is important: quality time with friends and family, traveling the world, and not worrying too much about the small stuff.
While focusing on what is important, and learning to do so, has truly been a gift, I ultimately want more *time*. I want to live as long as my peers, and experience the normal trajectory of young adulthood—marriage, kids, travel, and retirement.
When others help raise awareness for IPF, they help patients like me. IPF is considered a rare disease, and my doctors thought it was so unusual that I was diagnosed with this disease as a young adult, but now I know many people living with IPF who are under 45 years of age. It isn’t as rare as one might think it is. In fact, more people die of IPF in the U.S. each year than of breast cancer. So I’d like to raise the profile of this disease in September, which is Pulmonary Fibrosis Awareness month.
Not only might your efforts help someone recognize the early signs and symptoms of this disease, drastically improving their quality of life and raising the likelihood that they can live with PF for several years, but you can also help fund current research. There are many credible clinical trials happening around the world to improve outcomes for IPF patients via drug options or other alternative therapies. Funding this research enables patients like me, and many others living with IPF around the world, to have hope for a future.
Please help us change the outcome of this disease through research and treatment options by funding clinical trials, or by spreading the word about PF Awareness Month this September. Do it for me, and the 17 patients I’ve befriended but lost since my IPF diagnosis just a little over three years ago.
This is part 3 of a 4-part series. Stay tuned to find out how you can help spread the word about IPF.
Please don’t hesitate to reach out by leaving a comment below. I look forward to hearing from everyone while I continue to share my story with you all.