Treading water is difficult.
Sometimes, that’s how it feels navigating a new diagnosis. It’s like trying to keep your head above water in a vast, foreign ocean, as waves of information crash over you. It’s tiring and overwhelming.
There are ways to stay afloat.
Idiopathic Pulmonary Fibrosis: Partnering with Your Doctor came from a collaboration among three organizations:
I checked out the tool and, I have to say, it’s great – interactive, user-friendly and helpful.
But before I get into the program, here’s a little about pulmonary fibrosis:
- It causes lung tissue to scar.
- When doctors can’t find a cause, which happens frequently, it’s called idiopathic pulmonary fibrosis.
- There’s no cure – yet.
Back to the online tool, you can access it here. Just click “Start the Visit,” and you’re in.
You’ll find the site is pretty easy to navigate. You can browse the Table of Contents or the handy Where do you want to go next? sidebar.
Some of the main topics to explore:
- What is IPF?
- IPF Assessment and Testing
- IPF Therapies
- Sharing Concerns with Your Healthcare Team
Within each topic, there’s a brief informative video, and the Where do you want to go next? options change to fit the topic. You decide what to click, depending on what you want to know. Then there’s a video to hopefully answer your question.
I think the best part about the program is its adaptability.
If you have one question about IPF or 20 questions, if you’re a patient or a caregiver, chances are you’ll find something that will help you in navigating the diagnosis.
It doesn’t have to be overwhelming. You can find help.