One of the hardest parts of being diagnosed with a strange condition you’ve never heard of—like Idiopathic Pulmonary Fibrosis (IPF)—is just getting your arms around what the hell it is you’re facing.
For many newly-diagnosed patients, their first instinct is to turn to that marvel of the modern information age: the Internet. But the Internet can be both a blessing and a curse. You can find abundant (a bit too abundant) information on a disease like IPF. Stats and stories, facts, figures, and fear: They all tend to blur together.
How does someone still reeling from the shell shock of a diagnosis make sense of it all?
The folks at the Pulmonary Fibrosis Foundation (PFF) understand this probably better than most. That’s why they’ve teamed up with The Academy for Continued Healthcare Learning and ProPatient to develop an online tool to help new IPF patients understand their diagnosis. Idiopathic Pulmonary Fibrosis: Partnering with Your Doctor walks patients and caregivers through the most important things they need to know about IPF:
- what it is,
- how it’s treated, and
- how to live with it day in and day out.
Far from being a static resource, the program combines different media to create an interactive tool that walks users through different simulations and helps them create checklists for doctor’s visits. It’s all free of charge and designed for newly-diagnosed and “seasoned” patients alike.
The collaboration with the PFF means it has the seal of approval from an organization that regularly works to connect patients with physicians, researchers, and industry.
While a resource like this may not be the final word in learning about IPF, it’s something clearly designed with the patient in mind.