Pop quiz! What’s the difference between PF and IPF? (Other than an ‘I’?)
Answer: Basically, nothing. PF, or pulmonary fibrosis, is a condition that causes scarring of the lungs and prevents the delivery of oxygen into the bloodstream. IPF is idiopathic pulmonary fibrosis, which is the same thing but with an unknown cause.
And that, in a nutshell, is probably the easiest part of understanding IPF. Everything else, from diagnosis to treatment to symptom management, is a lot tougher to get a handle on. There’s a lot of new information to process, and it’s easy to get hung up on numbers—specifically, how many years can you live with IPF—and “what if” questions.
What patients need is a good overview of IPF, the treatments available, and a starting point for working with their doctors and finding support.
Fortunately, there are some good resources out there that fit the bill. One of these is the Pulmonary Fibrosis Patient Information Guide published by the Pulmonary Fibrosis Foundation (or PFF).
The PFF is a nonprofit organization dedicated to raising awareness of PF and IPF; they also raise funds for research projects looking into new treatments.
The Patient Guide offers a good, concise introduction into the possible causes and factors associated with PF and IPF. But the bulk of the guide is given over to information you can use right now, like diagnostic tests and assessments, treatment options, and lifestyle tips.
It also provides a handy list of questions to start meaningful conversations with your doctor and tips for taking an active role in your care.
Will this guide answer all your IPF questions? Probably not.
There’s a lot to learn about IPF, and all of it has to be viewed through the prism of your own situation and how IPF affects you. But if you’re looking for a good resource to get grounded, this might be the place to start.
Check out The Patient Guide, and then learn how the PFF is fighting IPF. Are there any other resources you’ve found handy? Share them in the comments below.
