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The changing outlook for an IPF prognosis

When I talk to patients, caregivers, or family members, almost all of them can recall the details of the pertinent diagnosis. After all, it’s a monumental life event. What each of us hears and how it’s interpreted can vary. When I was diagnosed with idiopathic pulmonary fibrosis (IPF)…

Discovering new ways to find joy in life with IPF

Joy is a simple three-letter word, but it can be elusive at times for those of us in the pulmonary fibrosis community. Patients and caregivers alike may often feel like no joy is to be found. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January…

Would you participate in clinical trials for IPF?

Being diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF) and learning that the disease is chronic, progressive, and incurable was a lot for one day. Of course, I wanted a cure or better therapies to be available immediately. But what I came to learn during my journey is…

Held back by breath: The reality of living with pulmonary fibrosis

When your lungs betray you, your voice becomes your strongest tool. That’s what it means to live and speak through pulmonary fibrosis (PF). Living with PF or another rare disease involves managing various challenges that can affect time, emotional well-being, and physical health. The countless doctor appointments, procedures,…