When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, there didn’t seem to be as much chaos in the world as there is today. Perhaps the drama seemed more distant, or maybe I was just completely engaged in learning about my disease. Today, every…

“You’ll Never Walk Alone” was written by Richard Rodgers and Oscar Hammerstein II for the 1945 musical “Carousel.” Many others have performed the song over the years, and it’s even become the anthem for Liverpool Football Club in England. Most recently, I’ve enjoyed the version by…

The first-of-its-kind Vicore COMPANION Study is now recruiting participants across the U.S. to test Almee, a new artificial intelligence (AI) app designed to help people with pulmonary fibrosis (PF) manage their anxiety. Developed by Vicore Pharma, Almee is an investigational digital cognitive behavioral therapy (CBT) that uses…

Carrying the weight of the world on your shoulders can be exhausting. Those of us touched by rare disease — whether as a patient, caregiver, loved one, or friend — understand that anxiety can be triggered by almost any activity. Examples might include anticipating a medical procedure, awaiting test results…

Are there sounds you associate with your happy place? Perhaps it’s a smell. For me, it’s the sound of a metal whisk in a metal bowl, the rhythm of a chef’s knife prepping ingredients, the aroma of a mirepoix as it begins to sweat. Food is my love language. I’ve…

During the course of having idiopathic pulmonary fibrosis (IPF) or any other rare disease, the role of the caregiver requires a large measure of patience, an ability to multitask, and the capability to pivot without knowing what lies ahead. Caregivers, whether working alone or as part of a team,…

As we approach year three of the COVID-19 pandemic, I am tired. I’m sure we all are. This pandemic fatigue, combined with the January blues, makes it a difficult time of year for many, and leaves the world feeling heavy and dark. While there is no immediate fix, being…

Last week, I wrote a column about needing to slow down as a patient living with idiopathic pulmonary fibrosis (IPF). Since its publication, I have spent a lot of time strategizing about how to do that. I am often guilty of saying I need to do something but neglecting…

My mom, Diana, has this endearing way of summarizing books she’s read or movies she’s seen by reducing entire plotlines to who’s in love with whom. As someone who’s studied the craft of storytelling, I have a hard time hearing great works of art being reduced to…

Like with all chronic illnesses, patients living with idiopathic pulmonary fibrosis (IPF) have a lot to contend with. Although IPF is a progressive and life-threatening lung disease, the physical challenges it presents, such as shortness of breath, fatigue, and cough, are often not the most difficult aspect. At least,…